A patient-centered research agenda for the care of the acutely ill older patient.

PubMed

Wald, Heidi L; Leykum, Luci K; Mattison, Melissa L P; Vasilevskis, Eduard E; Meltzer, David O

2015-05-01

Hospitalists and others acute-care providers are limited by gaps in evidence addressing the needs of the acutely ill older adult population. The Society of Hospital Medicine sponsored the Acute Care of Older Patients Priority Setting Partnership to develop a research agenda focused on bridging this gap. Informed by the Patient-Centered Outcomes Research Institute framework for identification and prioritization of research areas, we adapted a methodology developed by the James Lind Alliance to engage diverse stakeholders in the research agenda setting process. The work of the Partnership proceeded through 4 steps: convening, consulting, collating, and prioritizing. First, the steering committee convened a partnership of 18 stakeholder organizations in May 2013. Next, stakeholder organizations surveyed members to identify important unanswered questions in the acute care of older persons, receiving 1299 responses from 580 individuals. Finally, an extensive and structured process of collation and prioritization resulted in a final list of 10 research questions in the following areas: advanced-care planning, care transitions, delirium, dementia, depression, medications, models of care, physical function, surgery, and training. With the changing demographics of the hospitalized population, a workforce with limited geriatrics training, and gaps in evidence to inform clinical decision making for acutely ill older patients, the identified research questions deserve the highest priority in directing future research efforts to improve care for the older hospitalized patient and enrich training. © 2015 Society of Hospital Medicine.

Optimizing Patient-centered Communication and Multidisciplinary Care Coordination in Emergency Diagnostic Imaging: A Research Agenda.

PubMed

Sabbatini, Amber K; Merck, Lisa H; Froemming, Adam T; Vaughan, William; Brown, Michael D; Hess, Erik P; Applegate, Kimberly E; Comfere, Nneka I

2015-12-01

Patient-centered emergency diagnostic imaging relies on efficient communication and multispecialty care coordination to ensure optimal imaging utilization. The construct of the emergency diagnostic imaging care coordination cycle with three main phases (pretest, test, and posttest) provides a useful framework to evaluate care coordination in patient-centered emergency diagnostic imaging. This article summarizes findings reached during the patient-centered outcomes session of the 2015 Academic Emergency Medicine consensus conference "Diagnostic Imaging in the Emergency Department: A Research Agenda to Optimize Utilization." The primary objective was to develop a research agenda focused on 1) defining component parts of the emergency diagnostic imaging care coordination process, 2) identifying gaps in communication that affect emergency diagnostic imaging, and 3) defining optimal methods of communication and multidisciplinary care coordination that ensure patient-centered emergency diagnostic imaging. Prioritized research questions provided the framework to define a research agenda for multidisciplinary care coordination in emergency diagnostic imaging. © 2015 by the Society for Academic Emergency Medicine.

Patient and clinician views on comparative effectiveness research and engagement in research.

PubMed

Forsythe, Laura P; Frank, Lori; Walker, Kara Odom; Anise, Ayodola; Wegener, Natalie; Weisman, Harlan; Hunt, Gail; Beal, Anne

2015-01-01

Describe and compare patient and primary care clinician attitudes about comparative effectiveness research (CER) and inclusion of patients and clinicians as partners in clinical research. Online survey of patients (n = 900) and primary care clinicians (n = 750) from opt-in survey panels. Nearly half (45%) of clinicians were not familiar with CER, but after reviewing a definition of CER, most (76%) agreed that it can improve patient care. Patients and clinicians indicated interest in engagement as research partners (66% and 55%, respectively). Lack of time was the most commonly endorsed barrier. Attitudes toward CER and engagement in clinical research were generally favorable. Identified facilitators and barriers point to strategies for enhancing patient and clinician engagement in research.

Patient Care Coordinator | Center for Cancer Research

Cancer.gov

We are looking for a Patient Care Coordinator to join our thoracic and gastrointestinal oncology clinical team to help us coordinate care for patients enrolled on our clinical research protocols. Duties include scheduling appointments, coordinating new patients, obtaining patient records, attending weekly clinic meetings, and data base entry.  Be part of our mission to solve

Patient Care Coordinator | Center for Cancer Research

Cancer.gov

We are looking for a Patient Care Coordinator to join our clinical team to help us coordinate care for patients enrolled on our clinical research protocols. Duties include scheduling appointments, coordinating new patients, obtaining patient records, attending weekly clinic meetings, and data base entry. Be part of our mission to solve the most important, challenging and

Patient Care Coordinator | Center for Cancer Research

Cancer.gov

We are looking for a Patient Care Coordinator to join our women's malignancies clinical team to help us coordinate care for patients enrolled on our clinical research protocols. Duties include scheduling appointments, coordinating new patients, obtaining patient records, attending weekly clinic meetings, and data base entry. Be part of our mission to solve the most important,

Setting research priorities for patients on or nearing dialysis.

PubMed

Manns, Braden; Hemmelgarn, Brenda; Lillie, Erin; Dip, Sally Crowe P G; Cyr, Annette; Gladish, Michael; Large, Claire; Silverman, Howard; Toth, Brenda; Wolfs, Wim; Laupacis, Andreas

2014-10-07

With increasing emphasis among health care providers and funders on patient-centered care, it follows that patients and their caregivers should be included when priorities for research are being established. This study sought to identify the most important unanswered questions about the management of kidney failure from the perspective of adult patients on or nearing dialysis, their caregivers, and the health care professionals who care for these patients. Research uncertainties were identified through a national Canadian survey of adult patients on or nearing dialysis, their caregivers, and health care professionals. Uncertainties were refined by a steering committee that included patients, caregivers, researchers, and clinicians to assemble a short-list of the top 30 uncertainties. Thirty-four people (11 patients; five caregivers; eight physicians; six nurses; and one social worker, pharmacist, physiotherapist, and dietitian each) from across Canada subsequently participated in a workshop to determine the top 10 research questions. In total, 1570 usable research uncertainties were received from 317 respondents to the survey. Among these, 259 unique uncertainties were identified; after ranking, these were reduced to a short-list of 30 uncertainties. During the in-person workshop, the top 10 research uncertainties were identified, which included questions about enhanced communication among patients and providers, dialysis modality options, itching, access to kidney transplantation, heart health, dietary restrictions, depression, and vascular access. These can be used alongside the results of other research priority-setting exercises to guide researchers in designing future studies and inform health care funders. Copyright © 2014 by the American Society of Nephrology.

Setting Research Priorities for Patients on or Nearing Dialysis

PubMed Central

Hemmelgarn, Brenda; Lillie, Erin; Dip, Sally Crowe P.G.; Cyr, Annette; Gladish, Michael; Large, Claire; Silverman, Howard; Toth, Brenda; Wolfs, Wim; Laupacis, Andreas

2014-01-01

With increasing emphasis among health care providers and funders on patient-centered care, it follows that patients and their caregivers should be included when priorities for research are being established. This study sought to identify the most important unanswered questions about the management of kidney failure from the perspective of adult patients on or nearing dialysis, their caregivers, and the health care professionals who care for these patients. Research uncertainties were identified through a national Canadian survey of adult patients on or nearing dialysis, their caregivers, and health care professionals. Uncertainties were refined by a steering committee that included patients, caregivers, researchers, and clinicians to assemble a short-list of the top 30 uncertainties. Thirty-four people (11 patients; five caregivers; eight physicians; six nurses; and one social worker, pharmacist, physiotherapist, and dietitian each) from across Canada subsequently participated in a workshop to determine the top 10 research questions. In total, 1570 usable research uncertainties were received from 317 respondents to the survey. Among these, 259 unique uncertainties were identified; after ranking, these were reduced to a short-list of 30 uncertainties. During the in-person workshop, the top 10 research uncertainties were identified, which included questions about enhanced communication among patients and providers, dialysis modality options, itching, access to kidney transplantation, heart health, dietary restrictions, depression, and vascular access. These can be used alongside the results of other research priority–setting exercises to guide researchers in designing future studies and inform health care funders. PMID:24832095

Trends in Publications in Radiology Journals Designated as Relating to Patient-Centered Care.

PubMed

Rosenkrantz, Andrew B; Rawson, James V

2017-05-01

To assess trends in publications in radiology journals designated as dealing with patient-centered care. PubMed was searched for articles in radiology journals for which the article's record referenced patient-centered/patient-centric care. Among these, original research articles were identified and assigned major themes. Trends were assessed descriptively. A total of 115 articles in radiology journals designated as dealing with patient-centered care were identified, including 40 original research articles. The number of articles annually ranged from 0 to 4 in 2000-2008, 5 to 9 in 2010-2012, 14 to 15 in 2013-2014, and 25 in 2015. Only four radiology journals had published more than one of the original research articles. Original research articles' most common themes were: optimization of patients' access to reports and images (n=7); patients' examination experience (5); image evaluation (n=4); radiologists meeting with patients (n=4); improving patients' knowledge of imaging (n=3); examination wait times/efficiency (n=3); examination utilization/appropriateness (n=3); and IT enhancements (n=3). A total of 13 of 40 original research articles solicited opinions from patients. One study involved patients in educating trainees regarding patient-centered care. No study involved patients in system-level decisions regarding health care design and delivery. Articles dealing with patient-centered care in radiology are increasing, though they remain concentrated in a limited number of journals. Though major themes included image/report access, patient experiences, and radiologists meeting with patients, many studies dealt with less clearly patient-centric topics such as examination interpretation, while inclusion of patients in systems design was lacking. Further research in radiology is encouraged to target a broader range of ideals of patient-centered care, such as diversity, autonomy, and compassion, and to incorporate greater patient engagement. Copyright © 2016 American College of Radiology. Published by Elsevier Inc. All rights reserved.

Communication as care at end of life: an emerging issue from an exploratory action research study of renal end-of-life care for ethnic minorities in the UK.

PubMed

Wilkinson, Emma; Randhawa, Gurch; Brown, Edwina A; Da Silva Gane, Maria; Stoves, John; Warwick, Graham; Akhtar, Tahira; Magee, Regina; Sharman, Sue; Farrington, Ken

2014-09-01

South Asian people have a higher risk of developing kidney disease, are disproportionately represented in the patient population requiring renal replacement therapy and wait longer to receive a kidney transplant, compared with white Europeans. As a result, there is a demand for end-of-life care, which meets the needs of this group of patients. Providing end-of-life care to patients from different cultures is a challenge for renal services as there can be barriers to communication in the form of language, delegated decision-making within families and reluctance to discuss death. To explore end-of-life care for South Asians with kidney disease, 16 interviews with patients and 14 focus groups with care providers were conducted at four research sites in the UK with large South Asian populations. Using an action research design the data were analysed thematically and fed back to inform the research in a cyclical manner. If patients are not fully aware of their condition or of what end-of-life care is, it is less likely that they will be able to be involved in decision-making about their care and this is compounded where there are communication barriers. Variations in care provider awareness and experience of providing end-of-life care to South Asian patients, in turn, contributes to lack of patient awareness of end-of-life care. Communication as care at the end of life should be explored further. Researching the South Asian patient experience of end of life highlights many relevant and generalisable issues. © 2014 European Dialysis and Transplant Nurses Association/European Renal Care Association.

Differences between patients' and clinicians' research priorities from the Anaesthesia and Peri-operative Care Priority Setting Partnership.

PubMed

Boney, O; Nathanson, M H; Grocott, M P W; Metcalf, L

2017-09-01

The James Lind Alliance Anaesthesia and Peri-operative Care Priority Setting Partnership was a recent collaborative venture bringing approximately 2000 patients, carers and clinicians together to agree priorities for future research into anaesthesia and critical care. This secondary analysis compares the research priorities of 303 service users, 1068 clinicians and 325 clinicians with experience as service users. All three groups prioritised research to improve patient safety. Service users prioritised research about improving patient experience, whereas clinicians prioritised research about clinical effectiveness. Clinicians who had experience as service users consistently prioritised research more like clinicians than like service users. Individual research questions about patient experience were more popular with patients and carers than with clinicians in all but one case. We conclude that patients, carers and clinicians prioritise research questions differently. All groups prioritise research into patient safety, but service users also favour research into patient experience, whereas clinicians favour research into clinical effectiveness. © 2017 The Association of Anaesthetists of Great Britain and Ireland.

Developing a Research Agenda for Integrating Palliative Care into Critical Care and Pulmonary Practice To Improve Patient and Family Outcomes

PubMed Central

Reinke, Lynn F.; Cox, Christopher; Kross, Erin K.; Benzo, Roberto P.; Curtis, J. Randall

2017-01-01

Abstract Background: Palliative care is a medical specialty and philosophy of care that focuses on reducing suffering among patients with serious illness and their family members, regardless of disease diagnosis or prognosis. As critical illness or moderate to severe pulmonary disease confers significant disease-related symptom burdens, palliative care and palliative care specialists can aid in reducing symptom burden and improving quality of life among these patients and their family members. Objective: The objective of this article is to review the existing gaps in evidence for palliative care in pulmonary disease and critical illness and to use an interdisciplinary working group convened by the National Institutes of Health and the National Palliative Care Research Center to develop a research agenda to address these gaps. Methods: We completed a narrative review of the literature concerning the integration of palliative care into pulmonary and/or critical care. The review was based on recent systematic reviews on these topics as well as a summary of relevant articles identified through hand search. We used this review to identify gaps in current knowledge and develop a research agenda for the future. Results: We identified key areas of need and knowledge gaps that should be addressed to improve palliative care for patients with pulmonary and critical illness. These areas include developing and validating patient- and family-centered outcomes, identifying the key components of palliative care that are effective and cost-effective, developing and evaluating different models of palliative care delivery, and determining the effectiveness and cost-effectiveness of palliative care interventions. Conclusions: The goal of this research agenda is to encourage researchers, clinicians, healthcare systems, and research funders to identify research that can address these gaps and improve the lives of patients with pulmonary and critical illness and their family members. PMID:28379812

78 FR 9108 - Proposed Information Collection (Conduct the Point-of-Care Research Questionnaire) Activity...

Federal Register 2010, 2011, 2012, 2013, 2014

2013-02-07

... patient and provider attitudes and willingness to participate in Point-of-Care Research (POC-R). POC-R is... of a Point-of-care research innovation program by assessing the perceptions and attitudes of patients...

Effective recruitment strategies in primary care research: a systematic review.

PubMed

Ngune, Irene; Jiwa, Moyez; Dadich, Ann; Lotriet, Jaco; Sriram, Deepa

2012-01-01

Patient recruitment in primary care research is often a protracted and frustrating process, affecting project timeframes, budget and the dissemination of research findings. Yet, clear guidance on patient recruitment strategies in primary care research is limited. This paper addresses this issue through a systematic review. Articles were sourced from five academic databases - AustHealth, CINAHL, the Cochrane Methodology Group, EMBASE and PubMed/Medline; grey literature was also sourced from an academic library and the Primary Healthcare Research & Information Service (PHCRIS) website. Two reviewers independently screened the articles using the following criteria: (1) published in English, (2) reported empirical research, (3) focused on interventions designed to increase patient recruitment in primary care settings, and (4) reported patient recruitment in primary care settings. Sixty-six articles met the inclusion criteria. Of these, 23 specifically focused on recruitment strategies and included randomised trials (n = 7), systematic reviews (n = 8) and qualitative studies (n = 8). Of the remaining articles, 30 evaluated recruitment strategies, while 13 addressed the value of recruitment strategies using descriptive statistics and/or qualitative data. Among the 66 articles, primary care chiefly included general practice (n = 30); nursing and allied health services, multiple settings, as well as other community settings (n = 30); and pharmacy (n = 6). Effective recruitment strategies included the involvement of a discipline champion, simple patient eligibility criteria, patient incentives and organisational strategies that reduce practitioner workload. The most effective recruitment in primary care research requires practitioner involvement. The active participation of primary care practitioners in both the design and conduct of research helps to identify strategies that are congruent with the context in which patient care is delivered. This is reported to be the optimal recruitment strategy.

Health care professionals' attitudes regarding palliative care for patients with chronic heart failure: an interview study.

PubMed

Ziehm, Jeanette; Farin, Erik; Seibel, Katharina; Becker, Gerhild; Köberich, Stefan

2016-08-15

Even though struggling with similar symptom burden, patients with chronic heart failure (CHF) receive less palliative care than patients suffering from malignant diseases. Researchers have found that this might be related to lack of knowledge about palliative care, insufficient interprofessional communication as well as the cyclic course of disease which makes accurate prognosis difficult. However, research findings have shown that patients with CHF benefit from palliative care. As there are no studies for the German health care system this study aimed to assess health care professionals' attitudes regarding palliative care of CHF patients in order to identify barriers and facilitators for this patient group and hence to develop recommendations for improvement of CHF patients' access to palliative care in Germany. Problem-centered interviews with 23 health care professionals involved in care of CHF patients (nurses: hospital, outpatient, heart failure, PC; physicians: hospital and resident cardiologists, general practitioners) were conducted and analysed according to Mayring's qualitative content analysis. Most interviewees perceived a need for palliative care for CHF patients. Regarding barriers patients', public's, and professionals' lack of knowledge of palliative care and CHF; shortcomings in communication and cooperation of different professional groups; inability of cardiology to accept medical limits; difficult prognosis of course of disease; and patients' concerns regarding palliative care were described. Different attitudes regarding appropriate time of initiation of palliative care for CHF patients (late vs. early) were found. Furthermore, better communication and closer cooperation between different professional groups and medical disciplines as well as better education about palliative care and CHF for professionals, patients, and public were cited. Palliative care for CHF patients is a neglected topic in both practice and research and should receive more attention. Barriers to palliative care for CHF patients might be overcome by: better education for the public, patients, and professionals, closer cooperation between the different professional groups involved as well as development of a joint agreement regarding the appropriate time to administer palliative care to CHF patients. DRKS00007119 .

Unpacking the concept of patient satisfaction: a feminist analysis.

PubMed

Turris, Sheila A

2005-05-01

The aim of this paper is to present a feminist critique of the concept of patient satisfaction. Fiscal restraint, health care restructuring, shifting demographics, biomedical technological advances, and a significant shortage of health care professionals are stretching health care systems across North America to the breaking point. A simultaneous focus on consumerism and health service accountability is placing additional pressure on the system. The concept of patient satisfaction, with roots in the consumer movement of the 1960s, has both practical and political relevance in the current health care system and is commonly used to guide research related to consumer experiences of health care. Because the quality of health care encounters may lead to treatment-seeking delays, patient satisfaction research may be an effective vehicle for addressing this public health issue. However, there is wide agreement that patient satisfaction is an under-theorized concept. Using current conceptualizations of patient satisfaction, we end up all too often producing a checklist approach to 'achieving' patient satisfaction, rather than developing an understanding of the larger issues underlying individual experiences of health care. We focus on the symptoms rather than the problems. Without further theoretical refinement, the results of research into patient satisfaction are of limited use. To push forward theoretical development we might apply a variety of theoretical lenses to the analysis of both the concept and the results of patient satisfaction research. Feminism, in particular, offers a perspective that may provoke further refinement of patient satisfaction as a concept. Without a deeper understanding of the values and beliefs (or the worldview) that informs our approaches to researching patient satisfaction, researchers will be reacting to the most obvious indicators and failing to address the underlying issues related to individual experiences of health care.

Study examines trends for Medicare patients at EOL.

PubMed

2011-08-01

Patients are more likely to be treated by 10 doctors or more. Researcher says that great intensity of care does not necessarily mean higher quality of care. Physicians must listen more carefully to wishes of patients at the end of life, researcher says.

Clinically applied medical ethnography: relevance to cultural competence in patient care.

PubMed

Engebretson, Joan

2011-06-01

Medical anthropology provides an excellent resource for nursing research that is relevant to clinical nursing. By expanding the understanding of ethnographic research beyond ethnicity, nurses can conduct research that explores patient's constructions and explanatory models of health and healing and how they make meaning out of chronic conditions and negotiate daily life. These findings can have applicability to culturally competent care at both the organizational or systems level, as well as in the patient/provider encounter. Individual patient care can be improved by applying ethnographic research findings to build provider expertise and then using a cultural negotiation process for individualized patient care. Copyright © 2011. Published by Elsevier Inc.

Confronting Ethical and Regulatory Challenges of Emergency Care Research With Conscious Patients.

PubMed

Dickert, Neal W; Brown, Jeremy; Cairns, Charles B; Eaves-Leanos, Aaliyah; Goldkind, Sara F; Kim, Scott Y H; Nichol, Graham; O'Conor, Katie J; Scott, Jane D; Sinert, Richard; Wendler, David; Wright, David W; Silbergleit, Robert

2016-04-01

Barriers to informed consent are ubiquitous in the conduct of emergency care research across a wide range of conditions and clinical contexts. They are largely unavoidable; can be related to time constraints, physical symptoms, emotional stress, and cognitive impairment; and affect patients and surrogates. US regulations permit an exception from informed consent for certain clinical trials in emergency settings, but these regulations have generally been used to facilitate trials in which patients are unconscious and no surrogate is available. Most emergency care research, however, involves conscious patients, and surrogates are often available. Unfortunately, there is neither clear regulatory guidance nor established ethical standards in regard to consent in these settings. In this report-the result of a workshop convened by the National Institutes of Health Office of Emergency Care Research and Department of Bioethics to address ethical challenges in emergency care research-we clarify potential gaps in ethical understanding and federal regulations about research in emergency care in which limited involvement of patients or surrogates in enrollment decisions is possible. We propose a spectrum of approaches directed toward realistic ethical goals and a research and policy agenda for addressing these issues to facilitate clinical research necessary to improve emergency care. Copyright © 2015 American College of Emergency Physicians. Published by Elsevier Inc. All rights reserved.

Understanding and safeguarding patient dignity in intensive care.

PubMed

Nyholm, Linda; Koskinen, Camilla A-L

2017-06-01

Dignity has been highlighted in previous research as one of the most important ethical concerns in nursing care. According to Eriksson, dignified caring is related to treating the patient as a unique human being and respecting human value. Intensive care unit patients are vulnerable to threatened dignity, and maintaining dignity may be challenging as a consequence of critical illness. The aim is to highlight how nurses in an intensive care setting understand patient dignity, what threatens patient dignity and how nurses can safeguard patient dignity. Research design and participants: Data materials were collected through a survey questionnaire which contained open questions about patient dignity, and the text was analysed using hermeneutic reading and text interpretation. Totally, 25 nurses employed in an intensive care unit in Finland participated in the study. Ethical considerations: The study follows the guidelines for good scientific practice by the Finnish Advisory Board on Research Integrity and the ethical principles according to the Declaration of Helsinki. Findings revealed that nurses recognize the patients' absolute dignity by regarding them as unique human beings. The nurses also recognize the importance of shared humanity in preserving patient dignity. Intensive care patients' dignity is threatened by negative attitudes and when their integrity is not being protected. Dignity is also threatened when patients and nurses are not part of the patients' care and patient care decisions, when patients receive care against their will and because of the acute nature of intensive care.

Acute care research: is it ethical?

PubMed

Iserson, K V; Mahowald, M B

1992-07-01

Research in acute care is a troubling area for Institutional Review Board (IRB) approval and informed consent. Confusion about ethical and legal requirements has hampered research efforts and subsequent patient benefits. Acute care patients are the relatively few critical care patients who have suffered unexpected events that carry a high probability of mortality or severe morbidity unless immediate medical intervention is provided. We argue that acute care research is justified if the usual ethical requirements for research are modified to reflect the uniqueness of the situation. Our recommendations are to: a) use an explicit definition of acute care as distinct from other modes of critical care; b) eliminate the requirement for informed consent (as it is usually understood); and c) require stringent IRB oversight, regarding the unique ethical problems raised by this area of research. We further suggest that IRB oversight includes review of the protocol by a panel of individuals who represent possible enrollees in the proposed study.

Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs)

PubMed Central

Weldring, Theresa; Smith, Sheree M.S.

2013-01-01

In recent years, there has been an increased focus on placing patients at the center of health care research and evaluating clinical care in order to improve their experience and ensure that research is both robust and of maximum value for the use of medicinal products, therapy, or health services. This paper provides an overview of patients’ involvement in clinical research and service evaluation along with its benefits and limitations. We describe and discuss patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs), including the trends in current research. Both the patient-reported experiences measures (PREMs) and patient and public involvement (PPI) initiative for including patients in the research processes are also outlined. PROs provide reports from patients about their own health, quality of life, or functional status associated with the health care or treatment they have received. PROMs are tools and/or instruments used to report PROs. Patient report experiences through the use of PREMs, such as satisfaction scales, providing insight into the patients’ experience with their care or a health service. There is increasing international attention regarding the use of PREMS as a quality indicator of patient care and safety. This reflects the ongoing health service commitment of involving patients and the public within the wider context of the development and evaluation of health care service delivery and quality improvement. PMID:25114561

Does a biomedical research centre affect patient care in local hospitals?

PubMed

Lichten, Catherine A; Marsden, Grace; Pollitt, Alexandra; Kiparoglou, Vasiliki; Channon, Keith M; Sussex, Jon

2017-01-21

Biomedical research can have impacts on patient care at research-active hospitals. We qualitatively evaluated the impact of the Oxford Biomedical Research Centre (Oxford BRC), a university-hospital partnership, on the effectiveness and efficiency of healthcare in local hospitals. Effectiveness and efficiency are conceptualised in terms of impacts perceived by clinicians on the quality, quantity and costs of patient care they deliver. First, we reviewed documentation from Oxford BRC and literature on the impact of research activity on patient care. Second, we interviewed leaders of the Oxford BRC's research to identify the direct and indirect impacts they expected their activity would have on local hospitals. Third, this information was used to inform interviews with senior clinicians responsible for patient care at Oxford's acute hospitals to discover what impacts they observed from research generally and from Oxford BRC's research work specifically. We compared and contrasted the results from the two sets of interviews using a qualitative approach. Finally, we identified themes emerging from the senior clinicians' responses, and compared them with an existing taxonomy of mechanisms through which quality of healthcare may be affected in research-active settings. We were able to interview 17 research leaders at the Oxford BRC and 19 senior clinicians at Oxford's acute hospitals. The research leaders identified a wide range of beneficial impacts that they expected might be felt at local hospitals as a result of their research activity. They expected the impact of their research activity on patient care to be generally positive. The senior clinicians responsible for patient care at those hospitals presented a more mixed picture, identifying many positive impacts, but also a smaller number of negative impacts, from research activity, including that of the Oxford BRC. We found the existing taxonomy of benefit types to be helpful in organising the findings, and propose modifications to further improve its usefulness. Impacts from research activity on the effectiveness and efficiency of patient care at the local acute hospitals, as perceived by senior clinicians, were more often beneficial than harmful. The Oxford BRC contributed to those impacts.

Primary care research conducted in networks: getting down to business.

PubMed

Mold, James W

2012-01-01

This seventh annual practice-based research theme issue of the Journal of the American Board of Family Medicine highlights primary care research conducted in practice-based research networks (PBRNs). The issue includes discussion of (1) theoretical and methodological research, (2) health care research (studies addressing primary care processes), (3) clinical research (studies addressing the impact of primary care on patients), and (4) health systems research (studies of health system issues impacting primary care including the quality improvement process). We had a noticeable increase in submissions from PBRN collaborations, that is, studies that involved multiple networks. As PBRNs cooperate to recruit larger and more diverse patient samples, greater generalizability and applicability of findings lead to improved primary care processes.

Current Status of Palliative Care, Education, and Research

PubMed Central

Grant, Marcia; Elk, Ronit; Ferrell, Betty; Morrison, R. Sean; von Gunten, Charles F.

2010-01-01

Palliative and end-of-life care is changing in the United States. This dynamic field is improving the care for patients with serious and life-threatening cancer through creation of national guidelines for quality care, multidisciplinary educational offerings, research endeavors, and resources made available to clinicians. Barriers to implementing quality palliative care across cancer populations include a rapidly expanding population of older adults who will need cancer care and a decrease in the workforce available to give care. Ways to integrate current palliative care knowledge into care of patients include multidisciplinary national education and research endeavors, and clinician resources. Acceptance of palliative care as a recognized medical specialty provides a valuable resource for improvement of care. While the evidence base for palliative care is only beginning, national research support has assisted in providing support to build the knowledge foundation for appropriate palliative care. Opportunities are available for clinicians to understand and apply appropriate palliative and end-of-life care to patients with serious and life-threatening cancers. PMID:19729681

Intensive care unit research ethics and trials on unconscious patients.

PubMed

Gillett, G R

2015-05-01

There are widely acknowledged ethical issues in enrolling unconscious patients in research trials, particularly in intensive care unit (ICU) settings. An analysis of those issues shows that, by and large, patients are better served in units where research is actively taking place for several reasons: i) they do not fall prey to therapeutic prejudices without clear evidential support, ii) they get a chance of accessing new and potentially beneficial treatments, iii) a climate of careful monitoring of patients and their clinical progress is necessary for good clinical research and affects the care of all patients and iv) even those not in the treatment arm of a trial of a new intervention must receive best current standard care (according to international evidence-based treatment guidelines). Given that we have discovered a number of 'best practice' regimens of care that do not optimise outcomes in ICU settings, it is of great benefit to all patients (including those participating in research) that we are constantly updating and evaluating what we do. Therefore, the practice of ICU-based clinical research on patients, many of whom cannot give prospective informed consent, ticks all the ethical boxes and ought to be encouraged in our health system. It is very important that the evaluation of protocols for ICU research should not overlook obvious (albeit probabilistic) benefits to patients and the acceptability of responsible clinicians entering patients into well-designed trials, even though the ICU setting does not and cannot conform to typical informed consent procedures and requirements.

What level of self-care agency in mental illness? The factors affecting self-care agency and self-care agency in patients with mental illness.

PubMed

Çiftçi, Bahar; Yıldırım, Naci; Şahin Altun, Özlem; Avşar, Gülçin

2015-12-01

The purpose of this study is to evaluate self-care agency and the factors affecting self-care agency in patients with psychiatric disorders. The population of the study comprised patients diagnosed with mental disorders at the clinics of psychiatry in Erzurum Regional Training and Research Hospital and Atatürk University Research Hospital. Patient information forms and the Self-Care Agency Scale were used to collect the study data. Psychiatric nurse collected the data from the patients face to face. This study determined that the average age of the patients was determined to be 32.19±1.11. The findings indicated that the mean self-care agency level of the patients was 79.3±23.2. It was also found that the differences between sex, educational status, socio-economic status, and self-care agency levels were statistically significant (p<0.05). In conclusion, the patients' self-care agency levels were determined to be mid-level. The findings suggest that people with mental disorders have difficulty identifying their need for self-care. Thus, periodic training programs are necessary to increase self-care levels and further research studies of this type should be done on larger groups. Copyright © 2015 Elsevier Inc. All rights reserved.

A Research Agenda for Communication Between Health Care Professionals and Patients Living With Serious Illness.

PubMed

Tulsky, James A; Beach, Mary Catherine; Butow, Phyllis N; Hickman, Susan E; Mack, Jennifer W; Morrison, R Sean; Street, Richard L; Sudore, Rebecca L; White, Douglas B; Pollak, Kathryn I

2017-09-01

Poor communication by health care professionals contributes to physical and psychological suffering in patients living with serious illness. Patients may not fully understand their illness, prognosis, and treatment options or may not receive medical care consistent with their goals. Despite considerable research exploring the role of communication in this setting, many questions remain, and a clear agenda for communication research is lacking. Through a consensus conference and subsequent activities, we reviewed the state of the science, identified key evidence gaps in understanding the impact of communication on patient outcomes, and created an agenda for future research. We considered 7 broad topics: shared decision making, advance care planning, communication training, measuring communication, communication about prognosis, emotion and serious illness communication, and cultural issues. We identified 5 areas in which further research could substantially move the field forward and help enhance patient care: measurement and methodology, including how to determine communication quality; mechanisms of communication, such as identifying the specific clinician behaviors that patients experience as both honest and compassionate, or the role of bias in the clinical encounter; alternative approaches to advance care planning that focus on the quality of serious illness communication and not simply completion of forms; teaching and disseminating communication skills; and approaches, such as economic incentives and other clinician motivators, to change communication behavior. Our findings highlight the urgent need to improve quality of communication between health care professionals and patients living with serious illness through a broad range of research that covers communication skills, tools, patient education, and models of care.

The Many Faces of Patient-Centered Simulation: Implications for Researchers.

PubMed

Arnold, Jennifer L; McKenzie, Frederic Rick D; Miller, Jane Lindsay; Mancini, Mary E

2018-06-01

Patient-centered simulation for nonhealthcare providers is an emerging and innovative application for healthcare simulation. Currently, no consensus exists on what patient-centered simulation encompasses and outcomes research in this area is limited. Conceptually, patient-centered simulation aligns with the principles of patient- and family-centered care bringing this educational tool directly to patients and caregivers with the potential to improve patient care and outcomes. This descriptive article is a summary of findings presented at the 2nd International Meeting for Simulation in Healthcare Research Summit. Experts in the field delineated a categorization for better describing patient-centered simulation and reviewed the literature to identify a research agenda. Three types of patient-centered simulation patient-directed, patient-driven, and patient-specific are presented with research priorities identified for each. Patient-centered simulation has been shown to be an effective educational tool and has the potential to directly improve patient care outcomes. Presenting a typology for patient-centered simulation provides direction for future research.

Eye Care Professionals' Perspectives on Eye Donation and an Eye Donation Registry for Research: A Single-Institution, Cross-Sectional Study.

PubMed

Williams, Andrew M; Allingham, R Rand; Stamer, W Daniel; Muir, Kelly W

2016-06-01

A centralized eye donation registry for research could help to bridge the gap between patients interested in donating their eyes to science and scientists who conduct research on human eye tissue. Previous research has demonstrated patient and family support for such a registry. In this study, we assessed the views that eye care professionals have toward an eye donation registry for research. Surveys were distributed to all 46 clinical faculty members of the Duke University Eye Center. In addition to collecting demographic information, the surveys assessed clinicians' experience with discussing eye donation with patients, described the proposed eye donation registry for research and asked how the registry would affect the clinicians' practice. A total of 21 eye care professionals returned the survey. Thirty-three percent reported discussing eye donation with patients, and 43% reported that a patient has asked about donating their eyes for research on their disease. Eighty-six percent of eye care professionals reported that a centralized registry would improve the way they work with patients who express a desire to donate their eyes for research. The majority of eye care professionals at our academic institution indicated that an eye donation registry for research would improve how they work with patients who are interested in donating their eyes for research on their disease. Future research should examine how best to communicate this registry to ophthalmic patients.

Factors affecting consent in pediatric critical care research.

PubMed

Menon, Kusum; Ward, Roxanne E; Gaboury, Isabelle; Thomas, Margot; Joffe, Ari; Burns, Karen; Cook, Deborah

2012-01-01

Consent for research is a difficult and unpredictable process in pediatric critical care populations. The objectives of this study were to describe consent rates in pediatric critical care research and their association with patient, legal guardian, consent process, and study design-related factors. A prospective, cohort study was conducted from 2009 to 2010 in six tertiary care pediatric intensive care units (PICU) in Canada with legal guardians of patients who were approached for consent for any ongoing PICU research study. Data were recorded on details of the consent process for all consent encounters. We recorded 271 consent encounters. The overall consent rate was 80.1% (217/271). We observed higher consent rates when the research assistant was introduced by a member of the clinical team prior to approaching the family (89.7 vs. 77.7%; P = 0.04). Legal guardians of cardiac surgery patients were less likely to provide consent than those of all other patients (75.3 vs. 86.0%; P = 0.03). There was no difference in consent rates between therapeutic (117/145, 80.7%) versus non-therapeutic studies (100/126, 79.4%; P = 0.88). This study provides future researchers with consent data for determination of recruitment rates, sample sizes, budget estimations, and study timelines. Future pediatric critical care studies should consider incorporating the lower consent rates in cardiac surgery patients and routine introduction of the research assistant to the family by a member of the patient's care team into their study designs. The potential influence of parental factors on consent rates in pediatric critical care studies requires further research.

Patients' views of patient-centred care: a phenomenological case study in one surgical unit.

PubMed

Marshall, Amy; Kitson, Alison; Zeitz, Kathryn

2012-12-01

To report a study of patients' views of patient-centred care. The study aimed to explore patients' understanding and conceptualization of patient-centred care and link it to existing literature on the topic. Patient-centred care currently lacks a widely accepted definition, with much of the literature based on definitions formulated by health professionals and researchers. Qualitative research study grounded in phenomenology. Interpersonal interviews were conducted with ten participants who were patients in a surgical ward in a large metropolitan hospital in South Australia in 2010. Participants were unfamiliar with the concept of patient-centred care, but despite this, were able to describe what the term meant to them and what they wanted from their care. Patients equated the type and quality of care they received with the staff that provided it and themes of connectedness, involvement and attentiveness were prevalent in their descriptions of what they wanted from their care. Ensuring that patients have a voice in the definition and conceptualization of patient-centred care is essential and further and regular consultation with patients about their needs and priorities will ensure an integrated approach to patient-centred care. © 2012 Blackwell Publishing Ltd.

Optimizing the patient-centered environment: results of guided tours with health care providers and employees.

PubMed

Locatelli, Sara M; Turcios, Stephanie; LaVela, Sherri L

2015-01-01

To examine providers' perspectives on the care environment and patient-centered care (PCC) through the eyes of the veteran patient, using guided tours qualitative methodology. Environmental factors, such as attractiveness and function, have the potential to improve patients' experiences. Participatory qualitative methods allow researchers to explore the environment and facilitate discussion. Guided tours were conducted with 25 health care providers/employees at two Veterans Affairs (VA) health care facilities. In guided tours, participants lead the researcher through an environment, commenting on their surroundings, thoughts, and feelings. The researcher walks along with the participant, asking open-ended questions as needed to foster discussion and gain an understanding of the participant's view. Participants were asked to walk through the facility as though they were a veteran. Tours were audio recorded, with participant permission, and transcribed verbatim by research assistants. Three qualitative researchers were responsible for codebook development and coding transcripts and used data-driven coding approaches. Participants discussed physical appearance of the environment and how that influences perceptions about care. Overall, participants highlighted the need to shed the "institutional" appearance. Differences between VA and non-VA health care facilities were discussed, including availability of private rooms and staff to assist with navigating the facility. They reviewed resources in the facility, such as the information desk to assist patients and families. Finally, they offered suggestions for future improvements, including improvements to waiting areas and quiet areas for patients to relax and "get away" from their rooms. Participants highlighted many small changes to the care environment that could enhance the patient experience. Additionally, they examined the environment from the patient's perspective, to identify elements that enhance, or detract from, the patient's care experience. © The Author(s) 2015.

Developing a research agenda for patient safety in primary care. Background, aims and output of the LINNEAUS collaboration on patient safety in primary care.

PubMed

Esmail, Aneez; Valderas, Jose M; Verstappen, Wim; Godycki-Cwirko, Maciek; Wensing, Michel

2015-09-01

This paper is an introduction to a supplement to The European Journal of General Practice, bringing together a body of research focusing on the issue of patient safety in relation to primary care. The supplement represents the outputs of the LINNEAUS collaboration on patient safety in primary care, which was a four-year (2009-2013) coordination and support action funded under the Framework 7 programme by the European Union. Being a coordination and support action, its aim was not to undertake new research, but to build capacity through engaging primary care researchers and practitioners in identifying some of the key challenges in this area and developing consensus statements, which will be an essential part in developing a future research agenda. This introductory article describes the aims of the LINNEAUS collaboration, provides a brief summary of the reasons to focus on patient safety in primary care, the epidemiological and policy considerations, and an introduction to the papers included in the supplement.

Developing a research agenda for patient safety in primary care. Background, aims and output of the LINNEAUS collaboration on patient safety in primary care

PubMed Central

Esmail, Aneez; Valderas, Jose M.; Verstappen, Wim; Godycki-Cwirko, Maciek; Wensing, Michel

2015-01-01

ABSTRACT This paper is an introduction to a supplement to The European Journal of General Practice, bringing together a body of research focusing on the issue of patient safety in relation to primary care. The supplement represents the outputs of the LINNEAUS collaboration on patient safety in primary care, which was a four-year (2009–2013) coordination and support action funded under the Framework 7 programme by the European Union. Being a coordination and support action, its aim was not to undertake new research, but to build capacity through engaging primary care researchers and practitioners in identifying some of the key challenges in this area and developing consensus statements, which will be an essential part in developing a future research agenda. This introductory article describes the aims of the LINNEAUS collaboration, provides a brief summary of the reasons to focus on patient safety in primary care, the epidemiological and policy considerations, and an introduction to the papers included in the supplement. PMID:26339828

Understanding palliative care on the heart failure care team: an innovative research methodology.

PubMed

Lingard, Lorelei A; McDougall, Allan; Schulz, Valerie; Shadd, Joshua; Marshall, Denise; Strachan, Patricia H; Tait, Glendon R; Arnold, J Malcolm; Kimel, Gil

2013-05-01

There is a growing call to integrate palliative care for patients with advanced heart failure (HF). However, the knowledge to inform integration efforts comes largely from interview and survey research with individual patients and providers. This work has been critically important in raising awareness of the need for integration, but it is insufficient to inform solutions that must be enacted not by isolated individuals but by complex care teams. Research methods are urgently required to support systematic exploration of the experiences of patients with HF, family caregivers, and health care providers as they interact as a care team. To design a research methodology that can support systematic exploration of the experiences of patients with HF, caregivers, and health care providers as they interact as a care team. This article describes in detail a methodology that we have piloted and are currently using in a multisite study of HF care teams. We describe three aspects of the methodology: the theoretical framework, an innovative sampling strategy, and an iterative system of data collection and analysis that incorporates four data sources and four analytical steps. We anticipate that this innovative methodology will support groundbreaking research in both HF care and other team settings in which palliative integration efforts are emerging for patients with advanced nonmalignant disease. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Balancing health care education and patient care in the UK workplace: a realist synthesis.

PubMed

Sholl, Sarah; Ajjawi, Rola; Allbutt, Helen; Butler, Jane; Jindal-Snape, Divya; Morrison, Jill; Rees, Charlotte

2017-08-01

Patient care activity has recently increased without a proportionate rise in workforce numbers, impacting negatively on health care workplace learning. Health care professionals are prepared in part by spending time in clinical practice, and for medical staff this constitutes a contribution to service. Although stakeholders have identified the balance between health care professional education and patient care as a key priority for medical education research, there have been very few reviews to date on this important topic. We conducted a realist synthesis of the UK literature from 1998 to answer two research questions. (1) What are the key workplace interventions designed to help achieve a balance between health care professional education and patient care delivery? (2) In what ways do interventions enable or inhibit this balance within the health care workplace, for whom and in what contexts? We followed Pawson's five stages of realist review: clarifying scope, searching for evidence, assessment of quality, data extraction and data synthesis. The most common interventions identified for balancing health care professional education and patient care delivery were ward round teaching, protected learning time and continuous professional development. The most common positive outcomes were simultaneous improvements in learning and patient care or improved learning or improved patient care. The most common contexts in which interventions were effective were primary care, postgraduate trainee, nurse and allied health professional contexts. By far the most common mechanisms through which interventions worked were organisational funding, workload management and support. Our novel findings extend existing literature in this emerging area of health care education research. We provide recommendations for the development of educational policy and practice at the individual, interpersonal and organisational levels and call for more research using realist approaches to evaluate the increasing range of complex interventions to help balance health care professional education and patient care delivery. © 2017 The Authors. Medical Education published by Association for the Study of Medical Education and John Wiley & Sons Ltd.

Consensus statement: Palliative and supportive care in advanced heart failure.

PubMed

Goodlin, Sarah J; Hauptman, Paul J; Arnold, Robert; Grady, Kathleen; Hershberger, Ray E; Kutner, Jean; Masoudi, Frederick; Spertus, John; Dracup, Kathleen; Cleary, James F; Medak, Ruth; Crispell, Kathy; Piña, Ileana; Stuart, Brad; Whitney, Christy; Rector, Thomas; Teno, Joan; Renlund, Dale G

2004-06-01

A consensus conference was convened to define the current state and important gaps in knowledge and needed research on "Palliative and Supportive Care in Advanced Heart Failure." Evidence was drawn from expert opinion and from extensive review of the medical literature, evidence-based guidelines, and reviews. The conference identified gaps in current knowledge, practice, and research relating to prognostication, symptom management, and supportive care for advanced heart failure (HF). Specific conclusions include: (1) although supportive care should be integrated throughout treatment of patients with advanced HF, data are needed to understand how to best decrease physical and psychosocial burdens of advanced HF and to meet patient and family needs; (2) prognostication in advanced HF is difficult and data are needed to understand which patients will benefit from which interventions and how best to counsel patients with advanced HF; (3) research is needed to identify which interventions improve quality of life and best achieve the outcomes desired by patients and family members; (4) care should be coordinated between sites of care, and barriers to evidence-based practice must be addressed programmatically; and (5) more research is needed to identify the content and technique of communicating prognosis and treatment options with patients with advanced HF; physicians caring for patients with advanced HF must develop skills to better integrate the patient's preferences into the goals of care.

Engaging patients in primary care practice transformation: theory, evidence and practice.

PubMed

Sharma, Anjana E; Grumbach, Kevin

2017-06-01

Patient engagement is a fundamental strategy for achieving patient centred care and is receiving increasing attention in primary care reform efforts such as the patient-centred medical home and related care models. Much of the prior published theory and evidence supporting patient engagement has focused on improving engagement in individual care. Much less is understood about engaging patients as partners in practice improvement at the primary care clinic or practice level. We review the historical and policy context for the growing interest in the USA and UK in patient engagement at the primary care practice level, highlight findings from systematic reviews of the research evidence on practice-level patient engagement and discuss practical considerations for implementing patient engagement. We conclude that while there are persuasive ethical and social justice reasons for empowering patient involvement in practice improvement at the clinic level, research conducted to date in primary care provides suggestive but not yet resounding evidence in support of the instrumental triple aim benefit of practice-level patient engagement. We propose a research agenda to better understand the process and outcomes of practice-level patient engagement and its potential advantages to both the practice and the patients and communities served. Better evidence as well as resources to support and incentivize effective and feasible engagement methods are needed to catalyse greater diffusion of practice-level patient engagement in primary care practices. © The Author 2016. Published by Oxford University Press.

Patient Participation in Research in the Managed Care Environment: Key Perceptions of Members in an HMO

PubMed Central

Purdy, Sarah; Finkelstein, Jonathan A; Fletcher, Robert; Christiansen, Cindy; Inui, Thomas S

2000-01-01

This study's objective was to elicit the views of research among enrollees in an HMO. A questionnaire was mailed to 207 adult enrollees, 55% had been exposed to research and 45% had not. Ninety-four percent of respondents supported research within the HMO, and 87% thought using information from medical records for research was acceptable. Sixty-three percent thought participation in research increased patient understanding of health care. Significantly more prior research participants thought that participation in research improves care. More patients would participate if written information were provided (67%), if feedback of results was provided (72%), and if their clinician invited them (67%). Only a modest percentage (20%) of patients would participate in a randomized trial. PMID:10940136

Implementation of evidence-based patient navigation programs.

PubMed

Freund, Karen M

2017-02-01

Patient navigation refers to a direct patient care role that links patients with clinical providers and their support system and provides individualized support during cancer care, ensuring that patients have access to the knowledge and resources necessary to complete recommended treatment. While most reports have studied the role of patient navigators during the cancer screening or diagnostic process, emerging evidence indicates the benefits of patient navigation during active cancer treatment. Reports in the literature are conflicting on the impact of patient navigation during cancer care and on the benefits to timely or quality care in all populations. Recent sub-analyses of the Patient Navigation Research Program data demonstrated specifically the benefits of targeting patient navigation to the most vulnerable populations, including those with low educational attainment, low income and unstable housing, less social support, multiple comorbidities, and minority race/ethnicity. The implications of the Patient Navigation Research Program are that this resource is best utilized when directed to support the care of patients at locations with known challenges to timely care and for specific patients with risk factors for delays in care, including comorbidities, low educational attainment and low income. Implementation of patient navigation programs requires the following processes: needs assessment, selection of a navigator to meet the community and care needs, supervision and integration of the navigator into clinical processes, and systems support to facilitate the identification and tracking of those patients requiring patient navigation. There is a need for ongoing research on methods to fund and sustain patient navigation programs.

Reflections on the current and future roles of clinician-scientists.

PubMed

Baumal, Reuben; Benbassat, Jochanan; Van, Julie A D

2014-08-01

"Clinician-scientists" is an all-inclusive term for board-certified specialists who engage in patient care and laboratory-based (biomedical) research, patient-based (clinical) research, or population-based (epidemiological) research. In recent years, the number of medical graduates who choose to combine patient care and research has declined, generating concerns about the future of medical research. This paper reviews: a) the various current categories of clinician-scientists, b) the reasons proposed for the declining number of medical graduates who opt for a career as clinician-scientists, c) the various interventions aimed at reversing this trend, and d) the projections for the future role of clinician-scientists. Efforts to encourage students to combine patient care and research include providing financial and institutional support, and reducing the duration of the training of clinician-scientists. However, recent advances in clinical and biomedical knowledge have increased the difficulties in maintaining the dual role of care-providers and scientists. It was therefore suggested that rather than expecting clinician-scientists to compete with full-time clinicians in providing patient care, and with full-time investigators in performing research, clinician-scientists will increasingly assume the role of leading/coordinating interdisciplinary teams. Such teams would focus either on patient-based research or on the clinical, biomedical and epidemiological aspects of specific clinical disorders, such as hypertension and diabetes.

A Person-Centered, Registry-Based Learning Health System for Palliative Care: A Path to Coproducing Better Outcomes, Experience, Value, and Science

PubMed Central

Kamal, Arif H.; Kirkland, Kathryn B.; Meier, Diane E.; Nelson, Eugene C.; Pantilat, Steven Z.

2018-01-01

Abstract Background: Palliative care offers an approach to the care of people with serious illness that focuses on quality of life and aligning care with individual and family goals, and values in the context of what is medically achievable. Objective: Measurement of the impact of palliative care is critical for determining what works for which patients in what settings, to learn, improve care, and ensure access to high value care for people with serious illness. Methods: A learning health system that includes patients and families partnering with clinicians and care teams, is directly linked to a registry to support networks for improvement and research, and offers an ideal framework for measuring what matters to a range of stakeholders interested in improving care for this population. Measurements: Measurement focuses on the individual patient and family experience as the fundamental outcome of interest around which all care delivery is organized. Results: We describe an approach to codesigning and implementing a palliative care registry that functions as a learning health system, by combining patient and family inputs and clinical data to support person-centered care, quality improvement, accountability, transparency, and scientific research. Discussion: The potential for a palliative care learning health system that, by design, brings together enriched information environments to support coproduction of healthcare and facilitated peer networks to support patients and families, collaborative clinician networks to support palliative care program improvement, and collaboratories to support research and the application of research to benefit individual patients is immense. PMID:29091509

Assessing the value of patient-generated data to comparative effectiveness research.

PubMed

Howie, Lynn; Hirsch, Bradford; Locklear, Tracie; Abernethy, Amy P

2014-07-01

The goal of comparative effectiveness research is to assess medical therapies and allow patients, health care providers, payers, and policy makers to make evidence-based decisions about the most appropriate therapies in routine clinical practice. To conduct this type of research and to inform health care delivery, data about the impact of interventions on patient outcomes are needed. Methods of generating evidence for comparative effectiveness research provide opportunities to engage patients and understand their experiences with illness and its treatment. In this article we assess the need for, uses of, and strengths and weaknesses of patient-generated data. We also review in brief federal and medical society efforts to create new streams of patient-generated data for clinical and research use. We observe that the key to high-quality patient-generated data is to have immediate and actionable data so that patients experience the importance of the data for their own care as well as research purposes. We conclude that leveraging the emerging wealth of "big data" being generated by patient-facing technologies such as systems to collect patient-reported outcomes data and patient-worn sensors is critical to developing the evidence base that informs decisions made by patients, providers, and policy makers in pursuit of high-value medical care. Project HOPE—The People-to-People Health Foundation, Inc.

Patient issues in health research and quality of care: an inventory and data synthesis.

PubMed

Teunissen, Truus; Visse, Merel; de Boer, Pim; Abma, Tineke A

2013-12-01

The purpose of this review is to generate an inventory of issues that matter from a patient perspective in health research and quality of care. From these issues, criteria will be elicited to support patient(s) (groups) in their role as advisor or advocate when appraising health research, health policy and quality of health care. Literature shows that patients are beginning to develop their own voice and agenda's with issues in order to be prepared for the collaboration with professionals. Yet, patient issues have not been investigated systematically. This review addresses what patients find important and help to derive patient criteria for appraising research and quality of care. METHODS/SEARCH STRATEGY: Information was gathered from Western countries with similar economic, societal and health-care situations. We searched (from January 2000 to March 2010) for primary sources, secondary sources and tertiary sources; non-scientific publications were also included. The international inventory of issues that were defined by patients is covering a large array of domains. In total, 35 issue clusters further referred to as criteria were found ranging from dignity to cost effectiveness and family involvement. Issues from a patient perspective reveal patient values and appear to be adding to professional issues. Patient issues cover a broad domain, including fundamental values, quality of life, quality of care and personal development. Quite a few issues do not find its reflection in the scientific literature in spite of their clear and obvious appearance from tertiary sources. This may indicate a gap between the scientific research community and patient networks. © 2011 John Wiley & Sons Ltd.

Patient issues in health research and quality of care: an inventory and data synthesis

PubMed Central

Teunissen, Truus; Visse, Merel; de Boer, Pim; Abma, Tineke A.

2011-01-01

Abstract Aim  The purpose of this review is to generate an inventory of issues that matter from a patient perspective in health research and quality of care. From these issues, criteria will be elicited to support patient(s) (groups) in their role as advisor or advocate when appraising health research, health policy and quality of health care. Background  Literature shows that patients are beginning to develop their own voice and agenda’s with issues in order to be prepared for the collaboration with professionals. Yet, patient issues have not been investigated systematically. This review addresses what patients find important and help to derive patient criteria for appraising research and quality of care. Methods/search strategy  Information was gathered from Western countries with similar economic, societal and health‐care situations. We searched (from January 2000 to March 2010) for primary sources, secondary sources and tertiary sources; non‐scientific publications were also included. Results  The international inventory of issues that were defined by patients is covering a large array of domains. In total, 35 issue clusters further referred to as criteria were found ranging from dignity to cost effectiveness and family involvement. Issues from a patient perspective reveal patient values and appear to be adding to professional issues. Conclusions  Patient issues cover a broad domain, including fundamental values, quality of life, quality of care and personal development. Quite a few issues do not find its reflection in the scientific literature in spite of their clear and obvious appearance from tertiary sources. This may indicate a gap between the scientific research community and patient networks. PMID:21771226

Making communication research matter: what do patients notice, what do patients want, and what do patients need?

PubMed

Epstein, Ronald M

2006-03-01

To explore limitations of current communication theory by considering different perspectives of researchers, clinicians, patients and teachers of communication. Theory development based on limitations of the current communication research literature due to inconsistencies between patient reports and observed communication behavior. While researchers focus on the mechanics and techniques of communication, patients seek relationships in which they experience trust, the right amount of autonomy, caring, and expertise. Patients', physicians', and communication experts' perspectives do not always define the same problems and often point to different solutions. In addition to studying clinician behaviors and patient perceptions of care, communication research should focus on five additional factors: what patients notice, want and need, and how their perspectives differ from those of physicians and researchers; the context, including illness severity and type and family influences; how complex health systems facilitate and impede communication; patients' influences on physician communication behavior; and habits of mind that promote attentive care.

Patient Perspectives on the Learning Health System: The Importance of Trust and Shared Decision Making.

PubMed

Kelley, Maureen; James, Cyan; Alessi Kraft, Stephanie; Korngiebel, Diane; Wijangco, Isabelle; Rosenthal, Emily; Joffe, Steven; Cho, Mildred K; Wilfond, Benjamin; Lee, Sandra Soo-Jin

2015-01-01

We conducted focus groups to assess patient attitudes toward research on medical practices in the context of usual care. We found that patients focus on the implications of this research for their relationship with and trust in their physicians. Patients view research on medical practices as separate from usual care, demanding dissemination of information and in most cases, individual consent. Patients expect information about this research to come through their physician, whom they rely on to identify and filter associated risks. In general, patients support this research, but worry that participation in research involving randomization may undermine individualized care that acknowledges their unique medical histories. These findings suggest the need for public education on variation in practice among physicians and the need for a collaborative approach to the governance of research on medical practices that addresses core values of trust, transparency, and partnership.

From Dyadic Ties to Information Infrastructures: Care-Coordination between Patients, Providers, Students and Researchers

PubMed Central

Purkayastha, S.; Biswas, R.; Jai Ganesh, A.U.; Otero, P.

2015-01-01

Summary Objective To share how an effectual merging of local and online networks in low resource regions can supplement and strengthen the local practice of patient centered care through the use of an online digital infrastructure powered by all stakeholders in healthcare. User Driven Health Care offers the dynamic integration of patient values and evidence based solutions for improved medical communication in medical care. Introduction This paper conceptualizes patient care-coordination through the lens of engaged stakeholders using digital infrastructures tools to integrate information technology. We distinguish this lens from the prevalent conceptualization of dyadic ties between clinician-patient, patient-nurse, clinician-nurse, and offer the holistic integration of all stakeholder inputs, in the clinic and augmented by online communication in a multi-national setting. Methods We analyze an instance of the user-driven health care (UDHC), a network of providers, patients, students and researchers working together to help manage patient care. The network currently focuses on patients from LMICs, but the provider network is global in reach. We describe UDHC and its opportunities and challenges in care-coordination to reduce costs, bring equity, and improve care quality and share evidence. Conclusion UDHC has resulted in coordinated global based local care, affecting multiple facets of medical practice. Shared information resources between providers with disparate knowledge, results in better understanding by patients, unique and challenging cases for students, innovative community based research and discovery learning for all. PMID:26123908

From Dyadic Ties to Information Infrastructures: Care-Coordination between Patients, Providers, Students and Researchers. Contribution of the Health Informatics Education Working Group.

PubMed

Purkayastha, S; Price, A; Biswas, R; Jai Ganesh, A U; Otero, P

2015-08-13

To share how an effectual merging of local and online networks in low resource regions can supplement and strengthen the local practice of patient centered care through the use of an online digital infrastructure powered by all stakeholders in healthcare. User Driven Health Care offers the dynamic integration of patient values and evidence based solutions for improved medical communication in medical care. This paper conceptualizes patient care-coordination through the lens of engaged stakeholders using digital infrastructures tools to integrate information technology. We distinguish this lens from the prevalent conceptualization of dyadic ties between clinician-patient, patient-nurse, clinician-nurse, and offer the holistic integration of all stakeholder inputs, in the clinic and augmented by online communication in a multi-national setting. We analyze an instance of the user-driven health care (UDHC), a network of providers, patients, students and researchers working together to help manage patient care. The network currently focuses on patients from LMICs, but the provider network is global in reach. We describe UDHC and its opportunities and challenges in care-coordination to reduce costs, bring equity, and improve care quality and share evidence. UDHC has resulted in coordinated global based local care, affecting multiple facets of medical practice. Shared information resources between providers with disparate knowledge, results in better understanding by patients, unique and challenging cases for students, innovative community based research and discovery learning for all.

Improving Value for Patients with Eczema.

PubMed

Block, Julie

2018-04-01

Chronic diseases now represent a cost majority in the United States health care system. Contributing factors to rising costs include expensive novel and emerging therapies, under-treatment of disease, under-management of comorbidities, and patient dissatisfaction with care results. Critical to identifying replicable improvement methods is a reliable model to measure value. If we understand value within healthcare consumerism to be equal to a patient's health outcome improvement over costs associated with care (Value=Outcomes/Costs), we can use this equation to measure the improvement of value. Research and literature show that patient activation-the skills and confidence that equip patients to become actively engaged in their health care-impact health outcomes, costs, and patient experience. Reaching patient activation through engagement methods including shared decision-making (SDM) lead to improved value of care received. The National Eczema Association (NEA) Shared Decision-Making Resource Center can be a transformative strategy to measure and evaluate value of health care interventions for eczema patients to advance a value-driven health care system in the United States. Through this Resource Center, NEA will measure patient value through their own perceptions using validated PRO instruments and other patient-generated health data. Assessment of this data will reveal findings that can assist researchers in evaluating the impact this care framework on patient-perceived value across other chronic diseases. Copyright © 2018 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.

Multidisciplinary collaboration in primary care: through the eyes of patients.

PubMed

Cheong, Lynn H; Armour, Carol L; Bosnic-Anticevich, Sinthia Z

2013-01-01

Managing chronic illness is highly complex and the pathways to access health care for the patient are unpredictable and often unknown. While multidisciplinary care (MDC) arrangements are promoted in the Australian primary health care system, there is a paucity of research on multidisciplinary collaboration from patients' perspectives. This exploratory study is the first to gain an understanding of the experiences, perceptions, attitudes and potential role of people with chronic illness (asthma) on the delivery of MDC in the Australian primary health care setting. In-depth semi-structured interviews were conducted with asthma patients from Sydney, Australia. Qualitative analysis of data indicates that patients are significant players in MDC and their perceptions of their chronic condition, perceived roles of health care professionals, and expectations of health care delivery, influence their participation and attitudes towards multidisciplinary services. Our research shows the challenges presented by patients in the delivery and establishment of multidisciplinary health care teams, and highlights the need to consider patients' perspectives in the development of MDC models in primary care.

What constitutes meaningful engagement for patients and families as partners on research teams?

PubMed

Black, Agnes; Strain, Kimberly; Wallsworth, Christine; Charlton, Sara-Grey; Chang, Wilma; McNamee, Kate; Hamilton, Clayon

2018-01-01

Objective There is growing emphasis on health care organizations to ensure that lay people are meaningfully engaged as partners on research teams. Our aim was to explore the perspectives of patients, family members and informal caregivers who have been involved on health care research teams in Canada and elicit their recommendations for meaningful engagement. Methods We conducted a qualitative study guided by thematic analysis of transcripts of focus groups and interviews of 19 experienced patient research partners in Canada. Results We identified four main themes: research environment, expectations, support and value, which highlight participants' combined perspectives on important factors to ensure their engagement in research is meaningful. Conclusions Our findings add to the evolving evidence base on the perspectives of lay people involved in health care research and their recommendations for research leaders on meaningful engagement. Our study suggests that research leaders should provide a welcoming research environment, outline appropriate expectations for patient research partners on research teams, support patient research partners' engagement in projects and recognize the value patient research partners bring to health research.

Methods guiding stakeholder engagement in planning a pragmatic study on changing stroke systems of care.

PubMed

Gesell, Sabina B; Klein, Karen Potvin; Halladay, Jacqueline; Bettger, Janet Prvu; Freburger, Janet; Cummings, Doyle M; Lutz, Barbara J; Coleman, Sylvia; Bushnell, Cheryl; Rosamond, Wayne; Duncan, Pamela W

2017-04-01

The Comprehensive Post-Acute Stroke Services (COMPASS) Study is one of the first large pragmatic randomized-controlled clinical trials using comparative effectiveness research methods, funded by the Patient-Centered Outcomes Research Institute. In the COMPASS Study, we compare the effectiveness of a patient-centered, transitional care intervention versus usual care for stroke patients discharged home from acute care. Outcomes include stroke patient post-discharge functional status and caregiver strain 90 days after discharge, and hospital readmissions. A central tenet of Patient-Centered Outcomes Research Institute-funded research is stakeholder engagement throughout the research process. However, evidence on how to successfully implement a pragmatic trial that changes systems of care in combination with robust stakeholder engagement is limited. This combination is not without challenges. We present our approach for broad-based stakeholder engagement in the context of a pragmatic trial with the participation of patients, caregivers, community stakeholders, including the North Carolina Stroke Care Collaborative hospital network, and policy makers. To maximize stakeholder engagement throughout the COMPASS Study, we employed a conceptual model with the following components: (1) Patient and Other Stakeholder Identification and Selection; (2) Patient and Other Stakeholder Involvement Across the Spectrum of Research Activities; (3) Dedicated Resources for Patient and Other Stakeholder Involvement; (4) Support for Patient and Other Stakeholder Engagement Through Organizational Processes; (5) Communication with Patients and Other Stakeholders; (6) Transparent Involvement Processes; (7) Tracking of Engagement; and (8) Evaluation of Engagement. In this paper, we describe how each component of the model is being implemented and how this approach addresses existing gaps in the literature on strategies for engaging stakeholders in meaningful and useful ways when conducting pragmatic trials.

A systematic review of low back pain and sciatica patients' expectations and experiences of health care.

PubMed

Hopayian, Kevork; Notley, Caitlin

2014-08-01

Previous systematic reviews of patients' experience of health services have used mixed qualitative and quantitative studies. This review focused on qualitative studies, which are more suitable for capturing experience, using modern methods of synthesis of qualitative studies. To describe the experience of health care of low back pain and sciatica patients and the sources of satisfaction or dissatisfaction with special reference to patients who do not receive a diagnosis. A systematic review of qualitative studies. Primary qualitative studies identified from Medline, Embase, CINAHL, and Psychinfo databases. Conceptual themes of patients' experiences. Data collection and analysis were through thematic content analysis. Two reviewers independently screened titles and collected and analyzed data. The authors were in receipt of a Primary Care Research Bursary from National Health Service Suffolk and Norfolk Research Departments, a not-for-profit organization. Twenty-eight articles met the inclusion criteria. Most studies were of high quality. Nine themes emerged: the process and content of care, relationships and interpersonal skills, personalized care, information, the outcome of care, the importance of a diagnosis, delegitimation, recognizing the expert, and service matters. How care was given mattered greatly to patients, with importance given to receiving a perceived full assessment, consideration for the individual's context, good relationships, empathy, and the sharing of information. These aspects of care facilitated the acceptance by some of the limitations of health care and were spread across disciplines. Not having a diagnosis made coping more difficult for some but for others led to delegitimation, a feeling of not being believed. Service matters such as cost and waiting time received little mention. Although much research into the development of chronic low back pain (LBP) has focused on the patient, this review suggests that research into aspects of care also warrant research. The benefits of generic principles of care, such as personalization and communication, are important to patients with LBP and sciatica; so, practitioners may help their patients by paying as much attention to them as to specific interventions. When neither cure nor a diagnostic label is forthcoming, generic skills remain important for patient satisfaction. Copyright © 2014 Elsevier Inc. All rights reserved.

The contribution of organization theory to nursing health services research.

PubMed

Mick, Stephen S; Mark, Barbara A

2005-01-01

We review nursing and health services research on health care organizations over the period 1950 through 2004 to reveal the contribution of nursing to this field. Notwithstanding this rich tradition and the unique perspective of nursing researchers grounded in patient care production processes, the following gaps in nursing research remain: (1) the lack of theoretical frameworks about organizational factors relating to internal work processes; (2) the need for sophisticated methodologies to guide empirical investigations; (3) the difficulty in understanding how organizations adapt models for patient care delivery in response to market forces; (4) the paucity of attention to the impact of new technologies on the organization of patient care work processes. Given nurses' deep understanding of the inner workings of health care facilities, we hope to see an increasing number of research programs that tackle these deficiencies.

Varying ethics rules in clinical research and routine patient care – research ethics committee chairpersons’ views in Finland

PubMed Central

2014-01-01

Background To present empirical data on how the variation in regulating clinical research and patient care was perceived in Finland between 2009 and 2012. Methods Notes of interviews with 22 research ethics committee (REC) chairpersons were analyzed to identify whether differences in the regulation of clinical research and patient care were addressed. REC chairpersons’ opinions on three imaginary cases of clinical research projects challenging current research ethics rules (vignettes) were requested with a questionnaire; 18 of the 22 interviewed chairpersons responded. Results Based on REC chairpersons’ interviews, the differences between care and research regulation were not considered important issues in Finland. In the vignettes, REC chairpersons’ assumptions on how their REC would decide varied in regard to allowing research without informed consent, while solutions that are not allowed by current law were even anticipated. Mostly, but not always, the chairpersons’ own personal view agreed with their REC. Conclusions The distinction between care and research regulation has not been publicly challenged by Finnish RECs, even though it is a challenge when research relevant to health care is carried out. There is a need for debate and changes in laws and practices. PMID:24666735

Barriers and facilitators to the implementation of person-centred care in different healthcare contexts.

PubMed

Moore, Lucy; Britten, Nicky; Lydahl, Doris; Naldemirci, Öncel; Elam, Mark; Wolf, Axel

2017-12-01

To empower patients and improve the quality of care, policy-makers increasingly adopt systems to enhance person-centred care. Although models of person-centredness and patient-centredness vary, respecting the needs and preferences of individuals receiving care is paramount. In Sweden, as in other countries, healthcare providers seek to improve person-centred principles and address gaps in practice. Consequently, researchers at the University of Gothenburg Centre for Person-Centred Care are currently delivering person-centred interventions employing a framework that incorporates three routines. These include eliciting the patient's narrative, agreeing a partnership with shared goals between patient and professional, and safeguarding this through documentation. To explore the barriers and facilitators to the delivery of person-centred care interventions, in different contexts. Qualitative interviews were conducted with a purposeful sample of 18 researchers from seven research studies across contrasting healthcare settings. Interviews were transcribed, translated and thematically analysed, adopting some basic features of grounded theory. The ethical code of conduct was followed and conformed to the ethical guidelines adopted by the Swedish Research Council. Barriers to the implementation of person-centred care covered three themes: traditional practices and structures; sceptical, stereotypical attitudes from professionals; and factors related to the development of person-centred interventions. Facilitators included organisational factors, leadership and training and an enabling attitude and approach by professionals. Trained project managers, patients taking an active role in research and adaptive strategies by researchers all helped person-centred care delivery. At the University of Gothenburg, a model of person-centred care is being initiated and integrated into practice through research. Knowledgeable, well-trained professionals facilitate the routines of narrative elicitation and partnership. Strong leadership and adaptive strategies are important for overcoming existing practices, routines and methods of documentation. This study provides guidance for practitioners when delivering and adapting person-centred care in different contexts. © 2016 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.

Does the organizational structure of health care systems influence care-seeking decisions? A qualitative analysis of Danish cancer patients' reflections on care-seeking.

PubMed

Andersen, Rikke Sand; Vedsted, Peter; Olesen, Frede; Bro, Flemming; Søndergaard, Jens

2011-09-01

The absence of a more significant improvement in cancer survival in countries such as the UK and Denmark may be partly rooted in delayed care-seeking among cancer patients. Past research on patient delay has mainly focused on patient characteristics (e.g. sociodemographic and psychological factors and symptom recognition) as causes of delayed care-seeking, while few studies have examined how the organizational structure of health care systems may influence patients' reflections on seeking care. The aim of this study was to explore this relationship. The analysis presented is based on semi-structured interviews with 30 cancer patients and their families. The article raises two hypotheses on the relationship between structural elements of a health care system and people's reflections on seeking health care: (1) Gatekeeping introduces an asymmetrical relationship between the patient and the GP which potentially results in self-restricting care-seeking, (2) Continuity in the doctor-patient relationship may negatively influence patient reflections on access to health care, as the focus shifts from the medical issues of the consultation to reflections on how to properly interact with the GP and the system in which she/he is situated. It is concluded that these hypotheses form a sound basis for further primary care research on how the organizational structure of health care systems influences patient reflections on access to medical care.

Research at the Bedside: It Makes A Difference.

PubMed

Bridges, Elizabeth J

2015-07-01

Research at the bedside makes a difference for our patients, and also for our nurses. However, it is now time to broaden our focus from research on interventions or events at a narrow point in time to research that addresses care across the continuum. This continuum may start at the point of injury, such as the battlefield through en route care delivered during the 8000-mile journey home for our wounded warriors, or for critically ill patients as they move between the emergency department, operating room, and intensive care unit. This focus also requires researchers to consider "care within context," that is, research- and evidence-based practice tailored to the unique conditions of the care environment. Beyond conducting research and developing new knowledge is the challenge of translating evidence into practice. A culture of inquiry is a critical element in the successful translation of evidence into practice. In a culture of inquiry, nurses are encouraged to question and evaluate their practice, provide evidence-based care, and actively participate in and lead clinical inquiry. This article draws from a program of applied clinical research reflecting care across the continuum within both military and civilian health care settings and discusses how the application of these research findings and the advancement of a culture of inquiry make a difference for both patients and nurses. ©2015 American Association of Critical-Care Nurses.

Partnered research in healthcare delivery redesign for high-need, high-cost patients: development and feasibility of an Intensive Management Patient-Aligned Care Team (ImPACT).

PubMed

Zulman, Donna M; Ezeji-Okoye, Stephen C; Shaw, Jonathan G; Hummel, Debra L; Holloway, Katie S; Smither, Sasha F; Breland, Jessica Y; Chardos, John F; Kirsh, Susan; Kahn, James S; Asch, Steven M

2014-12-01

We employed a partnered research healthcare delivery redesign process to improve care for high-need, high-cost (HNHC) patients within the Veterans Affairs (VA) healthcare system. Health services researchers partnered with VA national and Palo Alto facility leadership and clinicians to: 1) analyze characteristics and utilization patterns of HNHC patients, 2) synthesize evidence about intensive management programs for HNHC patients, 3) conduct needs-assessment interviews with HNHC patients (n = 17) across medical, access, social, and mental health domains, 4) survey providers (n = 8) about care challenges for HNHC patients, and 5) design, implement, and evaluate a pilot Intensive Management Patient-Aligned Care Team (ImPACT) for a random sample of 150 patients. HNHC patients accounted for over half (52 %) of VA facility patient costs. Most (94 %) had three or more chronic conditions, and 60 % had a mental health diagnosis. Formative data analyses and qualitative assessments revealed a need for intensive case management, care coordination, transitions navigation, and social support and services. The ImPACT multidisciplinary team developed care processes to meet these needs, including direct access to team members (including after-hours), chronic disease management protocols, case management, and rapid interventions in response to health changes or acute service use. Two-thirds of invited patients (n = 101) enrolled in ImPACT, 87 % of whom remained actively engaged at 9 months. ImPACT is now serving as a model for a national VA intensive management demonstration project. Partnered research that incorporated population data analysis, evidence synthesis, and stakeholder needs assessments led to the successful redesign and implementation of services for HNHC patients. The rigorous design process and evaluation facilitated dissemination of the intervention within the VA healthcare system. Employing partnered research to redesign care for high-need, high-cost patients may expedite development and dissemination of high-value, cost-saving interventions.

Structural and reliability analysis of a patient satisfaction with cancer-related care measure: a multisite patient navigation research program study.

PubMed

Jean-Pierre, Pascal; Fiscella, Kevin; Freund, Karen M; Clark, Jack; Darnell, Julie; Holden, Alan; Post, Douglas; Patierno, Steven R; Winters, Paul C

2011-02-15

Patient satisfaction is an important outcome measure of quality of cancer care and 1 of the 4 core study outcomes of the National Cancer Institute (NCI)-sponsored Patient Navigation Research Program to reduce race/ethnicity-based disparities in cancer care. There is no existing patient satisfaction measure that spans the spectrum of cancer-related care. The objective of this study was to develop a Patient Satisfaction With Cancer Care measure that is relevant to patients receiving diagnostic/therapeutic cancer-related care. The authors developed a conceptual framework, an operational definition of Patient Satisfaction With Cancer Care, and an item pool based on literature review, expert feedback, group discussion, and consensus. The 35-item Patient Satisfaction With Cancer Care measure was administered to 891 participants from the multisite NCI-sponsored Patient Navigation Research Program. Principal components analysis (PCA) was conducted for latent structure analysis. Internal consistency was assessed using Cronbach coefficient alpha (α). Divergent analysis was performed using correlation analyses between the Patient Satisfaction With Cancer Care, the Communication and Attitudinal Self-Efficacy-Cancer, and demographic variables. The PCA revealed a 1-dimensional measure with items forming a coherent set explaining 62% of the variance in patient satisfaction. Reliability assessment revealed high internal consistency (α ranging from 0.95 to 0.96). The Patient Satisfaction With Cancer Care demonstrated good face validity, convergent validity, and divergent validity, as indicated by moderate correlations with subscales of the Communication and Attitudinal Self-Efficacy-Cancer (all P < .01) and nonsignificant correlations with age, primary language, marital status, and scores on the Rapid Estimate of Adult Literacy in Medicine Long Form (all P > .05). The Patient Satisfaction With Cancer Care is a valid tool for assessing satisfaction with cancer-related care for this sample. Copyright © 2010 American Cancer Society.

Ideologies and Research in Nursing Care. Nursing Education. Swedish Research on Higher Education.

ERIC Educational Resources Information Center

Wallen, Goran

Trends in nursing research in Sweden are first discussed in relation to nursing education. Beyond the university, two "roots" of nursing research are investigated: (1) The first studies included analysis of the working conditions of nursing care; and (2) Later research topics covered nurse-patient relations and patients' needs. The…

Time, timing, talking and training: findings from an exploratory action research study to improve quality of end of life care for minority ethnic kidney patients.

PubMed

Wilkinson, Emma; Randhawa, Gurch; Brown, Edwina; Da Silva Gane, Maria; Stoves, John; Warwick, Graham; Mir, Tahira; Magee, Regina; Sharman, Sue; Farrington, Ken

2017-06-01

Background. With an ageing and increasingly diverse population at risk from rising levels of obesity, diabetes and cardiovascular disease, including kidney complications, there is a need to provide quality care at all stages in the care pathway including at the end of life and to all patients. Aim . This study purposively explored South Asian patients' experiences of kidney end of life care to understand how services can be delivered in a way that meets diverse patient needs. Methods. Within an action research design 14 focus groups (45 care providers) of kidney care providers discussed the recruitment and analysis of individual interviews with 16 South Asian kidney patients (eight men, eight women). Emergent themes from the focus groups were analysed thematically. The research took place at four UK centres providing kidney care to diverse populations: West London, Luton, Leicester and Bradford. Results. Key themes related to time and the timing of discussions about end of life care and the factors that place limitations on patients and providers in talking about end of life care. Lack of time and confidence of nurses in areas of kidney care, individual attitudes and workforce composition influence whether and how patients have access to end of life care through kidney services. Conclusion. Training, team work and time to discuss overarching issues (including timing and communication about end of life) with colleagues could support service providers to facilitate access and delivery of end of life care to this group of patients.

Quality care provision for older people: an interview study with patients and primary healthcare professionals.

PubMed

van de Pol, Marjolein Helena Johanna; Fluit, Cornelia Rita Maria Gertruda; Lagro, Joep; Niessen, Danielle; Rikkert, Marcellinus Gerardus Maria Olde; Lagro-Janssen, Antoinette Leonarda Maria

2015-08-01

In recent years, primary health care for the ageing population has become increasingly complex. This study sought to explore the views and needs of healthcare professionals and older patients relating to primary care in order to identify focal areas for improving primary health care for older people. This research was structured as a mixed interview study with focus groups and individual interviews. Participants were made up of primary healthcare professionals and older patients. Patients were recruited from five elderly care homes in a small city in the southern part of the Netherlands. All interviews were transcribed verbatim and analysed by two individual researchers applying constant comparative analysis. Data collection proceeded until saturation was reached. Participants in the study agreed about the need for primary care for older patients, and showed sympathy with one another's perspectives. They did note, however, a number of obstacles hindering good healthcare provision. The major themes that arose were: 'autonomy and independence', 'organisational barriers', and 'professional expertise'. Participants generally noted that it is important to clarify differences in perspectives about good care between patients and healthcare professionals. Effective primary care intervention for older patients requires mutual understanding of the expectations and goals of all parties involved. There are a number of important requirements, especially accessible patient information in the form of care plans; specialist training for nurses and GPs on complex care and multimorbidity; and training on discussing autonomy, goal setting, and shared care. Further improvement in health care for older people and its evaluation research should focus on these requirements. © British Journal of General Practice 2015.

Interest in Providing Multiple Sclerosis Care and Subspecializing in Multiple Sclerosis Among Neurology Residents

PubMed Central

Teixeira-Poit, Stephanie; Kane, Heather L.; Frost, A. Corey; Keating, Michael; Olmsted, Murrey

2014-01-01

Background: Although detailed knowledge regarding treatment options for multiple sclerosis (MS) patients is largely limited to neurologists, shortages in the neurologist workforce, including MS subspecialists, are predicted. Thus, MS patients may have difficulties in gaining access to appropriate care. No systematic evaluation has yet been performed of the number of neurology residents planning to pursue MS subspecialization. This study identifies factors affecting interest in providing MS patient care or MS subspecialization among current neurology residents. Methods: We randomly selected half of all Accreditation Council of Graduate Medical Education–certified neurology residency programs in the continental United States to receive the neurology resident survey. Completed surveys were received from 218 residents. Results: Residents were significantly more likely to have increased interest in MS care when they participated in MS research, were interested in teaching, and indicated that the “ability to improve patient outcomes and quality of life” was a positive factor influencing their desire to provide MS patient care. Residents who were interested in providing MS care, interested in teaching, and indicated that “research opportunities” was a positive factor for providing MS patient care were significantly more likely to express interest in MS subspecialization. Conclusions: Increasing opportunities to interact with MS patients, learn about MS care, and participate in MS research may increase interest in MS care and subspecialization among neurology residents. Opportunities to educate residents regarding MS patient care may affect residents’ attitudes. PMID:24688352

Clinician styles of care: transforming patient care at the intersection of leadership and medicine.

PubMed

Huynh, Ho P; Sweeny, Kate

2014-11-01

A key role of clinicians is to motivate their patients to initiate and maintain beneficial health behaviors. This article integrates research on transformational leadership, clinician-patient communication, and health behavior to introduce a novel approach to understanding and improving clinicians' effectiveness as motivators. We describe three dominant clinician styles or patterned approaches to patient care that derive from leadership theory (in order of least to most effective): laissez-faire, transactional, and transformational. Additionally, we suggest potential mediators and effects of the transformational style of care. Finally, we discuss future research directions for the study of clinician styles of care. © The Author(s) 2013.

Conference on Gender-specific Research in Emergency Care: An Executive Summary

PubMed Central

Safdar, Basmah; Greenberg, Marna Rayl

2015-01-01

With the goal of reducing inequalities in patient care, the 2014 Academic Emergency Medicine (AEM) consensus conference, “Gender-Specific Research in Emergency Care: Investigate, Understand, and Translate How Gender Affects Patient Outcomes,” convened a diverse group of researchers, clinicians, health care providers, patients, and representatives of federal agencies and policy-makers in Dallas, Texas, in May 2014. The executive and steering committees identified seven clinical domains as key to gender-specific emergency care: cardiovascular, neurological, trauma/injury, substance abuse, pain, mental health, and diagnostic imaging. The main aims of the conference were to: 1) summarize and consolidate current data related to sex-and gender-specific research for acute care and identify critical gender-related gaps in knowledge to inform an EM research agenda; 2) create a consensus-driven research agenda that advances sex- and gender-specific research in the prevention, diagnosis, and management of acute diseases and identify strategies to investigate them; and 3) build a multinational interdisciplinary consortium to disseminate and study the sex and gender medicine of acute conditions. Over a 2-year period, this collaborative network of stakeholders identified key areas where sex- and gender-specific research is most likely to improve clinical care and ultimately patient outcomes. The iterative consensus process culminated in a daylong conference on May 13, 2014, with a total of 133 registrants, with the majority being between ages 31 and 50 years (57%), females (71%), and whites (79%). Content experts led the consensus-building workshops at the conference and used the nominal group technique to consolidate consensus recommendations for priority research. In addition, panel sessions addressed funding mechanisms for gender-specific research as well as gender-specific regulatory challenges to product development and approval. This special issue of AEM reports the results of the 2014 consensus conference as well as related original research with the goal of bringing high-quality equitable care to male and female emergency patients. PMID:25420469

Socio-Technical Systems Analysis in Health Care: A Research Agenda

PubMed Central

Bass, Ellen; Bellandi, Tommaso; Gurses, Ayse; Hallbeck, Susan; Mollo, Vanina

2012-01-01

Given the complexity of health care and the ‘people’ nature of healthcare work and delivery, STSA (Sociotechnical Systems Analysis) research is needed to address the numerous quality of care problems observed across the world. This paper describes open STSA research areas, including workload management, physical, cognitive and macroergonomic issues of medical devices and health information technologies, STSA in transitions of care, STSA of patient-centered care, risk management and patient safety management, resilience, and feedback loops between event detection, reporting and analysis and system redesign. PMID:22611480

Nature-based supportive care opportunities: a conceptual framework.

PubMed

Blaschke, Sarah; O'Callaghan, Clare C; Schofield, Penelope

2018-03-22

Given preliminary evidence for positive health outcomes related to contact with nature for cancer populations, research is warranted to ascertain possible strategies for incorporating nature-based care opportunities into oncology contexts as additional strategies for addressing multidimensional aspects of cancer patients' health and recovery needs. The objective of this study was to consolidate existing research related to nature-based supportive care opportunities and generate a conceptual framework for discerning relevant applications in the supportive care setting. Drawing on research investigating nature-based engagement in oncology contexts, a two-step analytic process was used to construct a conceptual framework for guiding nature-based supportive care design and future research. Concept analysis methodology generated new representations of understanding by extracting and synthesising salient concepts. Newly formulated concepts were transposed to findings from related research about patient-reported and healthcare expert-developed recommendations for nature-based supportive care in oncology. Five theoretical concepts (themes) were formulated describing patients' reasons for engaging with nature and the underlying needs these interactions address. These included: connecting with what is genuinely valued, distancing from the cancer experience, meaning-making and reframing the cancer experience, finding comfort and safety, and vital nurturance. Eight shared patient and expert recommendations were compiled, which address the identified needs through nature-based initiatives. Eleven additional patient-reported recommendations attend to beneficial and adverse experiential qualities of patients' nature-based engagement and complete the framework. The framework outlines salient findings about helpful nature-based supportive care opportunities for ready access by healthcare practitioners, designers, researchers and patients themselves. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

77 FR 26280 - Patient Safety Organizations: Voluntary Relinquishment From CareRise LLC

Federal Register 2010, 2011, 2012, 2013, 2014

2012-05-03

... Organizations: Voluntary Relinquishment From CareRise LLC AGENCY: Agency for Healthcare Research and Quality... relinquishment from CareRise LLC of its status as a Patient Safety Organization (PSO). The Patient Safety and... safety and the quality of health care delivery. HHS issued the Patient Safety and Quality Improvement...

Pre-Visit Prioritization for Complex Patients with Diabetes: Randomized Trial Design and Implementation within an Integrated Health Care System

PubMed Central

Grant, Richard W; Uratsu, Connie S; Hansen, Karen R; Altschuler, Andrea; Kim, Eileen; Fireman, Bruce; Adams, Alyce S; Schmittdiel, Julie A; Heisler, Michele

2016-01-01

Background/Aims Despite robust evidence to guide clinical care, most patients with diabetes do not meet all goals of risk factor control. Improved patient-provider communication during time-limited primary care visits may represent one strategy for improving diabetes care. Methods We designed a controlled, cluster-randomized, multi-site intervention (Pre-Visit Prioritization for Complex Patients with Diabetes) that enables patients with poorly controlled type 2 diabetes to identify their top priorities prior to a scheduled visit and sends these priorities to the primary care physician progress note in the electronic medical record. In this paper, we describe strategies to address challenges to implementing our health IT-based intervention study within a large health care system. Results This study is being conducted in 30 primary care practices within a large integrated care delivery system in Northern California. Over a 12-week period (3/1/2015 – 6/6/2015), 146 primary care physicians consented to enroll in the study (90.1%) and approved contact with 2496 of their patients (97.6%). Implementation challenges included: (1) Navigating research vs. quality improvement requirements; (2) Addressing informed consent considerations; and (3) Introducing a new clinical tool into a highly time-constrained workflow. Strategies for successfully initiating this study included engagement with institutional leaders, Institutional Review Board members, and clinical stakeholders at multiple stages both before and after notice of Federal funding; flexibility by the research team in study design; and strong support from institutional leadership for “self-learning health system” research. Conclusions By paying careful attention to identifying and collaborating with a wide range of key clinical stakeholders, we have shown that researchers embedded within a learning care system can successfully apply rigorous clinical trial methods to test new care innovations. PMID:26820612

Pre-Visit Prioritization for complex patients with diabetes: Randomized trial design and implementation within an integrated health care system.

PubMed

Grant, Richard W; Uratsu, Connie S; Estacio, Karen R; Altschuler, Andrea; Kim, Eileen; Fireman, Bruce; Adams, Alyce S; Schmittdiel, Julie A; Heisler, Michele

2016-03-01

Despite robust evidence to guide clinical care, most patients with diabetes do not meet all goals of risk factor control. Improved patient-provider communication during time-limited primary care visits may represent one strategy for improving diabetes care. We designed a controlled, cluster-randomized, multi-site intervention (Pre-Visit Prioritization for Complex Patients with Diabetes) that enables patients with poorly controlled type 2 diabetes to identify their top priorities prior to a scheduled visit and sends these priorities to the primary care physician progress note in the electronic medical record. In this paper, we describe strategies to address challenges to implementing our health IT-based intervention study within a large health care system. This study is being conducted in 30 primary care practices within a large integrated care delivery system in Northern California. Over a 12-week period (3/1/2015-6/6/2015), 146 primary care physicians consented to enroll in the study (90.1%) and approved contact with 2496 of their patients (97.6%). Implementation challenges included: (1) navigating research vs. quality improvement requirements; (2) addressing informed consent considerations; and (3) introducing a new clinical tool into a highly time-constrained workflow. Strategies for successfully initiating this study included engagement with institutional leaders, Institutional Review Board members, and clinical stakeholders at multiple stages both before and after notice of Federal funding; flexibility by the research team in study design; and strong support from institutional leadership for "self-learning health system" research. By paying careful attention to identifying and collaborating with a wide range of key clinical stakeholders, we have shown that researchers embedded within a learning care system can successfully apply rigorous clinical trial methods to test new care innovations. Copyright © 2016 Elsevier Inc. All rights reserved.

The provision of generalist and specialist palliative care for patients with non-malignant respiratory disease in the North and Republic of Ireland: a qualitative study.

PubMed

Veigh, Clare Mc; Reid, Joanne; Larkin, Philip; Porter, Sam; Hudson, Peter

2017-07-11

Previous research and key guidelines have suggested potential models of palliative care for patients with COPD and interstitial lung disease. However, these recommendations are often not effectively implemented in clinical practice and are void of guidance regarding palliative care for patients with bronchiectasis, another form of non-malignant respiratory disease. The aim of this research was to explore generalist and specialist palliative care service provision for people with non-malignant respiratory disease in the North and Republic of Ireland. Qualitative study involving a convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from 2 rural and 2 urban sites on the Island of Ireland. Data collection consisted of semi-structured interviews with carers of patients with COPD, interstitial lung disease or bronchiectasis who had died 3-18 months previously; and 4 focus groups with healthcare professionals. Data analysed using thematic analysis. Findings highlighted the lack of a clear model of holistic care delivery for patients with non-malignant respiratory disease and illuminated the varying levels of palliative care provision this client group experienced. Additionally, ambiguity amongst healthcare professionals regarding prognostication illuminated the importance of the provision of palliative care being based on patient need, not prognosis. This research developed a potential model of palliative care which may help healthcare professionals introduce palliative care, and specialist respiratory care, early in the disease trajectory of non-malignant respiratory disease, whilst also encouraging the involvement of specialist palliative care for complex symptom management. This research provides an important insight into a potential model of palliative care for people with non-malignant respiratory disease, inclusive of bronchiectasis. However, the feasibility of integrating this model into clinical practice requires further exploration.

Balancing research interests and patient interests: a qualitative study into the intertwinement of care and research in paediatric oncology.

PubMed

Dekking, Sara A S; van der Graaf, Rieke; Kars, Marijke C; Beishuizen, Auke; de Vries, Martine C; van Delden, Johannes J M

2015-05-01

Traditionally, in ethical guidelines and in research ethics literature, care and research are clearly separated based on their different objectives. In contrast, in paediatric oncology, research and care are closely combined. Currently, it is unknown how relevant actors in paediatric oncology perceive this combination of research and care. We conducted a qualitative study into the experiences of those involved in Dutch paediatric oncology with the intertwinement of research and care and the dual role of paediatric oncologists as researchers and treating physicians. A qualitative study approach, using two focus groups and 19 semi-structured, in-depth interviews with paediatric oncologists, research coordinators, parents of children with cancer, and adolescents with cancer. Four themes characterize how actors experience the intertwinement of research and care in paediatric oncology. First, research is considered of major importance, and paediatric oncology professionals convey this message to patients and their parents. Second, there is ambiguity about categorization of studies into cancer therapy as either research or treatment. Third, role conflicts appear within the work of the paediatric oncologists. Finally, the various benefits of combining treatment with research are emphasized. Research is regarded as a fundamental and indispensable characteristic of paediatric oncology practice. Paediatric oncology professionals, parents, and patients have a very positive outlook on combining research and care, but they may not be sufficiently critical with respect to potential conflicts. Increased reflection on how to optimally combine research and care could serve as an important protection of the interests of children with cancer and their parents. © 2015 Wiley Periodicals, Inc.

How Qualitative Research Informs Clinical and Policy Decision Making in Transplantation: A Review.

PubMed

Tong, Allison; Morton, Rachael L; Webster, Angela C

2016-09-01

Patient-centered care is no longer just a buzzword. It is now widely touted as a cornerstone in delivering quality care across all fields of medicine. However, patient-centered strategies and interventions necessitate evidence about patients' decision-making processes, values, priorities, and needs. Qualitative research is particularly well suited to understanding the experience and perspective of patients, donors, clinicians, and policy makers on a wide range of transplantation-related topics including organ donation and allocation, adherence to prescribed therapy, pretransplant and posttransplant care, implementation of clinical guidelines, and doctor-patient communication. In transplantation, evidence derived from qualitative research has been integrated into strategies for shared decision-making, patient educational resources, process evaluations of trials, clinical guidelines, and policies. The aim of this article is to outline key concepts and methods used in qualitative research, guide the appraisal of qualitative studies, and assist clinicians to understand how qualitative research may inform their practice and policy.

Comparative effectiveness research in DARTNet primary care practices: point of care data collection on hypoglycemia and over-the-counter and herbal use among patients diagnosed with diabetes.

PubMed

Libby, Anne M; Pace, Wilson; Bryan, Cathy; Anderson, Heather Orton; Ellis, Samuel L; Allen, Richard Read; Brandt, Elias; Huebschmann, Amy G; West, David; Valuck, Robert J

2010-06-01

The Distributed Ambulatory Research in Therapeutics Network (DARTNet) is a federated network of electronic health record (EHR) data, designed as a platform for next-generation comparative effectiveness research in real-world settings. DARTNet links information from nonintegrated primary care clinics that use EHRs to deliver ambulatory care to overcome limitations with traditional observational research. Test the ability to conduct a remote, electronic point of care study in DARTNet practices by prompting clinic staff to obtain specific information during a patient encounter. Prospective survey of patients identified through queries of clinical data repositories in federated network organizations. On patient visit, survey is triggered and data are relinked to the EHR, de-identified, and copied for evaluation. Adult patients diagnosed with diabetes mellitus that scheduled a clinic visit for any reason in a 2-week period in DARTNet primary care practices. Survey on hypoglycemic events (past month) and over-the-counter and herbal supplement use. DARTNet facilitated point of care data collection triggered by an electronic prompt for additional information at a patient visit. More than one-third of respondents (33% response rate) reported either mild (45%) or severe hypoglycemic events (5%) in the month before the survey; only 3 of those were also coded using the ICD-9 (a significant difference in detection rates 37% vs. 1%). Nearly one-quarter of patients reported taking an OTC/herbal, 4% specifically for the treatment of symptoms of diabetes. Prospective data collection is feasible in DARTNet and can enable comparative effectiveness and safety research.

Developing a Web-Based Nursing Practice and Research Information Management System: A Pilot Study.

PubMed

Choi, Jeeyae; Lapp, Cathi; Hagle, Mary E

2015-09-01

Many hospital information systems have been developed and implemented to collect clinical data from the bedside and have used the information to improve patient care. Because of a growing awareness that the use of clinical information improves quality of care and patient outcomes, measuring tools (electronic and paper based) have been developed, but most of them require multiple steps of data collection and analysis. This necessitated the development of a Web-based Nursing Practice and Research Information Management System that processes clinical nursing data to measure nurses' delivery of care and its impact on patient outcomes and provides useful information to clinicians, administrators, researchers, and policy makers at the point of care. This pilot study developed a computer algorithm based on a falls prevention protocol and programmed the prototype Web-based Nursing Practice and Research Information Management System. It successfully measured performance of nursing care delivered and its impact on patient outcomes successfully using clinical nursing data from the study site. Although Nursing Practice and Research Information Management System was tested with small data sets, results of study revealed that it has the potential to measure nurses' delivery of care and its impact on patient outcomes, while pinpointing components of nursing process in need of improvement.

Privacy preserving integration of health care data.

PubMed

Adam, Nabil; White, Tom; Shafiq, Basit; Vaidya, Jaideep; He, Xiaoyun

2007-10-11

For health care related research studies the medical records of patients may need to be retrieved from multiple sites with different regulations on the disclosure of health information. Given the sensitive nature of health care information, privacy is a major concern when patients' health care data is used for research purposes. In this paper, we propose an approach for integration and querying of health care data from multiple sources in a secure and privacy preserving manner.

Research Nurse | Center for Cancer Research

Cancer.gov

We are looking for research nurses to join our clinical program to help us manage the care of patients participating in clinical trials. Duties include, but are not limited to, ensuring adherence to ethical practice in the conduct of clinical trials, research protocol compliance and good clinical practice, ensuring patient comprehension of informed consent, management of care

Chronic disease patients' experiences with accessing health care in rural and remote areas: a systematic review and qualitative meta-synthesis.

PubMed

Brundisini, F; Giacomini, M; DeJean, D; Vanstone, M; Winsor, S; Smith, A

2013-01-01

Rurality can contribute to the vulnerability of people with chronic diseases. Qualitative research can identify a wide range of health care access issues faced by patients living in a remote or rural setting. To systematically review and synthesize qualitative research on the advantages and disadvantages rural patients with chronic diseases face when accessing both rural and distant care. This report synthesizes 12 primary qualitative studies on the topic of access to health care for rural patients with chronic disease. Included studies were published between 2002 and 2012 and followed adult patients in North America, Europe, Australia, and New Zealand. Qualitative meta-synthesis was used to integrate findings across primary research studies. Three major themes were identified: geography, availability of health care professionals, and rural culture. First, geographic distance from services poses access barriers, worsened by transportation problems or weather conditions. Community supports and rurally located services can help overcome these challenges. Second, the limited availability of health care professionals (coupled with low education or lack of peer support) increases the feeling of vulnerability. When care is available locally, patients appreciate long-term relationships with individual clinicians and care personalized by familiarity with the patient as a person. Finally, patients may feel culturally marginalized in the urban health care context, especially if health literacy is low. A culture of self-reliance and community belonging in rural areas may incline patients to do without distant care and may mitigate feelings of vulnerability. Qualitative research findings are not intended to generalize directly to populations, although meta-synthesis across a number of qualitative studies builds an increasingly robust understanding that is more likely to be transferable. Selected studies focused on the vulnerability experiences of rural dwellers with chronic disease; findings emphasize the patient rather than the provider perspective. This study corroborates previous knowledge and concerns about access issues in rural and remote areas, such as geographical distance and shortage of health care professionals and services. Unhealthy behaviours and reduced willingness to seek care increase patients' vulnerability. Patients' perspectives also highlight rural culture's potential to either exacerbate or mitigate access issues. People who live in a rural area may feel more vulnerable--that is, more easily harmed by their health problems or experiences with the health care system. Qualitative research looks at these experiences from the patient's point of view. We found 3 broad concerns in the studies we looked at. The first was geography: needing to travel long distances for health care can make care hard to reach, especially if transportation is difficult or the weather is bad. The second concern was availability of health professionals: rural areas often lack health care services. Patients may also feel powerless in "referral games" between rural and urban providers. People with low education or without others to help them may find navigating care more difficult. When rural services are available, patients like seeing clinicians who have known them for a long time, and like how familiar clinicians treat them as a whole person. The third concern was rural culture: patients may feel like outsiders in city hospitals or clinics. As well, in rural communities, people may share a feeling of self-reliance and community belonging. This may make them more eager to take care of themselves and each other, and less willing to seek distant care. Each of these factors can increase or decrease patient vulnerability, depending on how health services are provided.

Patient Partnerships Transforming Sleep Medicine Research and Clinical Care: Perspectives from the Sleep Apnea Patient-Centered Outcomes Network

PubMed Central

Redline, Susan; Baker-Goodwin, Si; Bakker, Jessie P.; Epstein, Matthew; Hanes, Sherry; Hanson, Mark; Harrington, Zinta; Johnston, James C.; Kapur, Vishesh K.; Keepnews, David; Kontos, Emily; Lowe, Andy; Owens, Judith; Page, Kathy; Rothstein, Nancy

2016-01-01

Due to an ongoing recent evolution in practice, sleep medicine as a discipline has been compelled to respond to the converging pressures to reduce costs, improve outcomes, and demonstrate value. Patient “researchers” are uniquely placed to participate in initiatives that address the specific needs and priorities of patients and facilitate the identification of interventions with high likelihood of acceptance by the “customer.” To date, however, the “patient voice” largely has been lacking in processes affecting relevant policies and practice guidelines. In this Special Report, patient and research leaders of the Sleep Apnea Patient-Centered Outcomes Network (SAPCON), a national collaborative group of patients, researchers and clinicians working together to promote patient-centered comparative effectiveness research, discuss these interrelated challenges in the context of sleep apnea, and the role patients and patient-centered networks may play in informing evidence-based research designed to meet patient's needs. We first briefly discuss the challenges facing sleep medicine associated with costs, outcomes, and value. We then discuss the key role patients and patient-centered networks can play in efforts to design research to guide better sleep health care, and national support for such initiatives. Finally, we summarize some of the challenges in moving to a new paradigm of patient-researcher-clinician partnerships. By forging strong partnerships among patients, clinicians and researchers, networks such as SAPCON can serve as a living demonstration of how to achieve value in health care. Citation: Redline S, Baker-Goodwin S, Bakker JP, Epstein M, Hanes S, Hanson M, Harrington Z, Johnston JC, Kapur VK, Keepnews D, Kontos E, Lowe A, Owens J, Page K, Rothstein N, Sleep Apnea Patient-Centered Outcomes Network. Patient partnerships transforming sleep medicine research and clinical care: perspectives from the Sleep Apnea Patient-Centered Outcomes Network. J Clin Sleep Med 2016;12(7):1053–1058. PMID:27166300

[Nursing care systematization for outpatient treatment care of patients with multiple sclerosis].

PubMed

Corso, Nair Assunta Antônia; Gondim, Ana Paula Soares; Dalmeida, Patrícia Chagas Rocha; Albuquerque, Maria Girlene de Freitas

2013-06-01

An experience report of nurses in the implementation of care systematization in ambulatory care in an interdisciplinary care center for patients with multiple sclerosis of a public hospital in Fortaleza, Ceará, Brazil. This implementation is based on the NANDA International, Inc., Nursing Interventions Classification, and Nursing Outcomes Classifications. One of the results concerns systemized nursing care, which has enabled the identification and understanding of the responses of MS patients to potential and current health problems. Systematization entails expanding knowledge through a practice based on approach and encourage further research scientific evidence, in addition to promoting the role of the nurse in acomprehensive approachand encourage further research.

Creating conditions for good nursing by attending to the spiritual.

PubMed

Biro, Anne L

2012-12-01

To note similarities, differences, and gaps in the literature on good nursing and spiritual care. Good nursing care is essential for meeting patient health needs. With growing recognition of the role of spirituality in health, understanding spiritual care as it relates to good nursing is important, especially as spiritual care has been recognized as the most neglected area of nursing care. Nursing research, reports and discussion articles from a variety of countries were reviewed on the topics of good nursing, spiritual care and spirituality. A nurse's spirituality and the nurse-patient relationship are integral to spiritual care and good nursing. There are many commonalities between good nursing and spiritual care. Personal attributes of the nurse are described in similar terms in research on spiritual care and good nursing. Professional attributes common to good nursing and spiritual care are the nurse-patient relationship, assessment skills and communication skills. Good nursing through spiritual care is facilitated by personal spirituality, training in spiritual care and a culture that implements changes supportive of spiritual care. Further research is needed to address limitations in the scope of literature. © 2012 Blackwell Publishing Ltd.

A Research Agenda to Advance the Coordination of Care for General Medical and Substance Use Disorders.

PubMed

Quinn, Amity E; Rubinsky, Anna D; Fernandez, Anne C; Hahm, Hyeouk Chris; Samet, Jeffrey H

2017-04-01

The separation of addiction care from the general medical care system has a negative impact on patients' receipt of high-quality medical care. Clinical and policy-level strategies to improve the coordination of addiction care and general medical care include identifying and engaging patients with unhealthy substance use in general medical settings, providing effective chronic disease management of substance use disorders in primary care, including patient and family perspectives in care coordination, and implementing pragmatic models to pay for the coordination of addiction and general medical care. This Open Forum discusses practice and research recommendations to advance the coordination of general medical and addiction care. The discussion is based on the proceedings of a national meeting of experts in 2014.

Pain care for patients with epidermolysis bullosa: best care practice guidelines.

PubMed

Goldschneider, Kenneth R; Good, Julie; Harrop, Emily; Liossi, Christina; Lynch-Jordan, Anne; Martinez, Anna E; Maxwell, Lynne G; Stanko-Lopp, Danette

2014-10-09

Inherited epidermolysis bullosa (EB) comprises a group of rare disorders that have multi-system effects and patients present with a number of both acute and chronic pain care needs. Effects on quality of life are substantial. Pain and itching are burdensome daily problems. Experience with, and knowledge of, the best pain and itch care for these patients is minimal. Evidence-based best care practice guidelines are needed to establish a base of knowledge and practice for practitioners of many disciplines to improve the quality of life for both adult and pediatric patients with EB. The process was begun at the request of Dystrophic Epidermolysis Bullosa Research Association International (DEBRA International), an organization dedicated to improvement of care, research and dissemination of knowledge for EB patients worldwide. An international panel of experts in pain and palliative care who have extensive experience caring for patients with EB was assembled. Literature was reviewed and systematically evaluated. For areas of care without direct evidence, clinically relevant literature was assessed, and rounds of consensus building were conducted. The process involved a face-to-face consensus meeting that involved a family representative and methodologist, as well as the panel of clinical experts. During development, EB family input was obtained and the document was reviewed by a wide variety of experts representing several disciplines related to the care of patients with EB. The first evidence-based care guidelines for the care of pain in EB were produced. The guidelines are clinically relevant for care of patients of all subtypes and ages, and apply to practitioners of all disciplines involved in the care of patients with EB. When the evidence suggests that the diagnosis or treatment of painful conditions differs between adults and children, it will be so noted. Evidence-based care guidelines are a means of standardizing optimal care for EB patients, whose disease is often times horrific in its effects on quality of life, and whose care is resource-intensive and difficult. The guideline development process also highlighted areas for research in order to improve further the evidence base for future care.

The Association of Proxy Care Engagement with Proxy Reports of Patient Experience and Quality of Life.

PubMed

Roydhouse, Jessica K; Gutman, Roee; Keating, Nancy L; Mor, Vincent; Wilson, Ira B

2018-05-27

To assess the association of proxy-specific covariates with proxy-reported patient cancer care experience, quality rating, and quality of life. Secondary analysis of data from the Cancer Care Outcomes Research and Surveillance (CanCORS) study. Cross-sectional observational study. The respondents were proxies for patients with incident colorectal or lung cancer. Analyses used linear regression models and adjusted for patient sociodemographic and clinical characteristics. Outcomes included patients' experiences with medical care, nursing care, and care coordination, overall quality ratings, and physical and mental health, all scored on 0-100 scales (0 = worst, 100 = best). Independent variables included the proxy's relationship with the patient and engagement in patient care. Of 1,011 proxies, most were the patient's spouse (50 percent) or child (36 percent). Although most proxies (66 percent) always attended medical visits, 3 percent reported never attending. After adjustment, on average children reported worse experiences and poorer quality care than spouses (4-9 points lower across outcomes). Proxies who never attended medical visits reported significantly worse medical care (-11 points, 95 percent CI = -18 to -3) and care coordination (-13 points, 95 percent CI = -20 to -6). Collecting data on proxy engagement in care is warranted if proxy responses are used. © Health Research and Educational Trust.

Quality care provision for older people: an interview study with patients and primary healthcare professionals

PubMed Central

van de Pol, Marjolein Helena Johanna; Fluit, Cornelia Rita Maria Gertruda; Lagro, Joep; Niessen, Danielle; Rikkert, Marcellinus Gerardus Maria Olde; Lagro-Janssen, Antoinette Leonarda Maria

2015-01-01

Background In recent years, primary health care for the ageing population has become increasingly complex. Aim This study sought to explore the views and needs of healthcare professionals and older patients relating to primary care in order to identify focal areas for improving primary health care for older people. Design and setting This research was structured as a mixed interview study with focus groups and individual interviews. Participants were made up of primary healthcare professionals and older patients. Patients were recruited from five elderly care homes in a small city in the southern part of the Netherlands. Method All interviews were transcribed verbatim and analysed by two individual researchers applying constant comparative analysis. Data collection proceeded until saturation was reached. Results Participants in the study agreed about the need for primary care for older patients, and showed sympathy with one another’s perspectives. They did note, however, a number of obstacles hindering good healthcare provision. The major themes that arose were: ‘autonomy and independence’, ‘organisational barriers’, and ‘professional expertise’. Participants generally noted that it is important to clarify differences in perspectives about good care between patients and healthcare professionals. Conclusion Effective primary care intervention for older patients requires mutual understanding of the expectations and goals of all parties involved. There are a number of important requirements, especially accessible patient information in the form of care plans; specialist training for nurses and GPs on complex care and multimorbidity; and training on discussing autonomy, goal setting, and shared care. Further improvement in health care for older people and its evaluation research should focus on these requirements. PMID:26212845

Lecture Cancelled

Cancer.gov

Dr. Jennifer Temel is an Associate Professor of Medicine at Harvard Medical School and Director of the Cancer Outcomes Research Program at the Massachusetts General Hospital (MGH) Cancer Center.  She is also the Clinical Director of Thoracic Oncology at the MGH Cancer Center and provides oncology care for patients with lung and esophageal cancer. Her research focuses on improving palliative, supportive and end of life care for patients with cancer and their families.  She has received funding from the National Cancer Institute, the National Institute of Nursing Research, the Patient Centered Outcomes Research Institute, and the American Cancer Society to study novel methods of improving the care of cancer patients. One of the main focuses of Dr. Temel’s research involves studying the integration of palliative and oncology care in patients with advanced cancers.  Her work in this area has been published in the New England Journal of Medicine, the Journal of Clinical Oncology, and JAMA.  She was awarded a National Cancer Institute mid-career development award to mentor others in palliative and end of life care in oncology and serves as the co-Principal Investigator on a National Cancer Institute grant to conduct a workshop on methods in supportive oncology research for junior faculty. Dr. Temel recently received the American Academy of Hospice and Palliative Medicine Award for Excellence in Scientific Research, the American Cancer Society Pathfinder Award for her impact on the field of palliative care, and the American Psychosocial Oncology Society Award for Outstanding Education and Training.

Validation of the Polish version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care in patients with advanced cancer.

PubMed

Leppert, Wojciech; Majkowicz, Mikolaj

2013-05-01

Limited data exist on the validation of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care in advanced cancer patients. To adapt the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care to the Polish clinical setting and to evaluate its psychometric properties in advanced cancer patients. Two quality-of-life measurements were performed at baseline and after 7 days. The concurrent validity of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care was established by the Pearson correlation coefficients with the modified Edmonton Symptom Assessment System, the Karnofsky Performance Status and the Brief Pain Inventory - Short Form. Reliability was assessed using Cronbach's alpha coefficients and the Spearman correlation coefficients of the baseline and of the second measurement of European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care items. A total of 160 consecutive patients in one academic palliative medicine centre were included. A total of 129 patients completed the study. The concurrent validity revealed significant correlations of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care pain scale with the Brief Pain Inventory - Short Form, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care symptom items with the modified Edmonton Symptom Assessment System and European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care functional scales with the Karnofsky Performance Status scores. High Cronbach's alpha and standardised Cronbach's alpha values were found in the case of both functional (range: 0.830-0.925; 0.830-0.932) and symptom scales (range: 0.784-0.940; 0.794-0.941) of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care, respectively. The Spearman correlation coefficients between the first and the second measurements were significant (p < 0.0001) for all European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care items. Polish version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire - Core 15 - Palliative Care is a valid and reliable tool recommended for quality-of-life assessment and monitoring in advanced cancer patients.

Patient-Centered Care: Depends on the Point of View

ERIC Educational Resources Information Center

Lorig, Kate

2012-01-01

Patient-centered care is now front-and-center in health care reform. The federal government has established the Patient-Centered Outcomes Research Institute to study this new phenomenon and health care delivery systems such as patient-centered medical homes. Where is the health education profession in all of this? Despite what it has to offer, to…

75 FR 9913 - Request for Measures of Patient Experiences of Cancer Care

Federal Register 2010, 2011, 2012, 2013, 2014

2010-03-04

... DEPARTMENT OF HEALTH AND HUMAN SERVICES Agency for Healthcare Research and Quality Request for Measures of Patient Experiences of Cancer Care AGENCY: Agency for Healthcare Research and Quality, HHS. ACTION: Notice of request. SUMMARY: The Agency for Healthcare Research and Quality (AHRQ), in...

Using a supportive care framework to understand and improve palliative care among cancer patients in Africa.

PubMed

Busolo, David S; Woodgate, Roberta L

2016-06-01

Cancer incidence and mortality are increasing in Africa, which is leading to greater demands for palliative care. There has been little progress in terms of research, pain management, and policies related to palliative care. Palliative care in Africa is scarce and scattered, with most African nations lacking the basic services. To address these needs, a guiding framework that identifies care needs and directs palliative care services could be utilized. Therefore, using the supportive care framework developed by Fitch (Fitch, 2009), we here review the literature on palliative care for patients diagnosed with cancer in Africa and make recommendations for improvement. The PubMed, Scopus, CINAHL, Web of Science, Embase, PsycINFO, Social Sciences Citation Index, and Medline databases were searched. Some 25 English articles on research from African countries published between 2004 and 2014 were selected and reviewed. The reviewed literature was analyzed and presented using the domains of the supportive care framework. Palliative care patients with cancer in Africa, their families, and caregivers experience increasing psychological, physical, social, spiritual, emotional, informational, and practical needs. Care needs are often inadequately addressed because of a lack of awareness as well as deficient and scattered palliative care services and resources. In addition, there is sparse research, education, and policies that address the dire situation in palliative care. Our review findings add to the existing body of knowledge demonstrating that palliative care patients with cancer in Africa experience disturbing care needs in all domains of the supportive care framework. To better assess and address these needs, holistic palliative care that is multidomain and multi-professional could be utilized. This approach needs to be individualized and to offer better access to services and information. In addition, research, education, and policies around palliative care for cancer patients in Africa could be more comprehensive if they were based on the domains of the supportive care framework.

Health Care Ergonomics: Contributions of Thomas Waters.

PubMed

Poole Wilson, Tiffany; Davis, Kermit G

2016-08-01

The aim of this study was to assess the contributions of Thomas Waters's work in the field of health care ergonomics and beyond. Waters's research of safe patient handling with a focus on reducing musculoskeletal disorders (MSDs) in health care workers contributed to current studies and prevention strategies. He worked with several groups to share his research and assist in developing safe patient handling guidelines and curriculum for nursing students and health care workers. The citations of articles that were published by Waters in health care ergonomics were evaluated for quality and themes of conclusions. Quality was assessed using the Mixed Methods Appraisal Tool and centrality to original research rating. Themes were documented by the type of population the citing articles were investigating. In total, 266 articles that referenced the top seven cited articles were evaluated. More than 95% of them were rated either medium or high quality. The important themes of these citing articles were as follows: (a) Safe patient handling is effective in reducing MSDs in health care workers. (b) Shift work has negative impact on nurses. (c) There is no safe way to manually lift a patient. (d) Nurse curriculums should contain safe patient handling. The research of Waters has contributed significantly to the health care ergonomics and beyond. His work, in combination with other pioneers in the field, has generated multiple initiatives, such as a standard safe patient-handling curriculum and safe patient-handling programs. © 2016, Human Factors and Ergonomics Society.

Establishing research priorities for patient safety in emergency medicine: a multidisciplinary consensus panel.

PubMed

Plint, Amy C; Stang, Antonia S; Calder, Lisa A

2015-01-01

Patient safety in the context of emergency medicine is a relatively new field of study. To date, no broad research agenda for patient safety in emergency medicine has been established. The objective of this study was to establish patient safety-related research priorities for emergency medicine. These priorities would provide a foundation for high-quality research, important direction to both researchers and health-care funders, and an essential step in improving health-care safety and patient outcomes in the high-risk emergency department (ED) setting. A four-phase consensus procedure with a multidisciplinary expert panel was organized to identify, assess, and agree on research priorities for patient safety in emergency medicine. The 19-member panel consisted of clinicians, administrators, and researchers from adult and pediatric emergency medicine, patient safety, pharmacy, and mental health; as well as representatives from patient safety organizations. In phase 1, we developed an initial list of potential research priorities by electronically surveying a purposeful and convenience sample of patient safety experts, ED clinicians, administrators, and researchers from across North America using contact lists from multiple organizations. We used simple content analysis to remove duplication and categorize the research priorities identified by survey respondents. Our expert panel reached consensus on a final list of research priorities through an in-person meeting (phase 3) and two rounds of a modified Delphi process (phases 2 and 4). After phases 1 and 2, 66 unique research priorities were identified for expert panel review. At the end of phase 4, consensus was reached for 15 research priorities. These priorities represent four themes: (1) methods to identify patient safety issues (five priorities), (2) understanding human and environmental factors related to patient safety (four priorities), (3) the patient perspective (one priority), and (4) interventions for improving patient safety (five priorities). This study established expert, consensus-based research priorities for patient safety in emergency medicine. This framework could be used by researchers and health-care funders and represents an essential guiding step towards enhancing quality of care and patient safety in the ED.

The link between new and return business and quality of care: patient satisfaction.

PubMed

Greeneich, D

1993-09-01

New and return business in the service setting are linked to quality of care through patient satisfaction. This article explores the conceptual underpinnings of this concept. Moreover, a theoretical model of patient satisfaction is delineated based on existing nursing research in patient satisfaction. Implications for nursing practice, administration, education, and research are discussed.

The Need for Cultural Competency in Health Care.

PubMed

Abrishami, Doris

2018-05-01

To highlight the importance of cultural competency education in health care and in the medical imaging industry. A comprehensive search of the Education Resource Information Center and MEDLINE databases was conducted to acquire full-text and peer-reviewed articles relating to cultural competency training in health care. A total of 1008 academic journal articles and 3 books were identified for this literature review. Search criteria was narrowed to peer-reviewed articles published between 2000 and 2016, resulting in 24 articles. A majority of the research studies addressed cultural competency education in allied health professions, as well as psychology and athletic training. Recent research studies pertaining to the cultural competence of imaging professionals were not found. Research shows that the behaviors of health care providers can contribute to health disparities. National standards have been established to promote patient-centered care that reduces or eliminates health disparities in the U.S. Lectures and training sessions help professionals maintain these standards, but they might not be adequate. Health care workers need to interact and work with diverse patient populations to increase their empathy and become culturally competent. A patient-centered care approach that responds to patients' unique needs and reduces health disparities among diverse patient populations can be achieved by training culturally competent health care professionals. More research is needed to determine the nature of cultural competency education taught in radiography programs. ©2018 American Society of Radiologic Technologists.

Excellent Patient Care Processes in Poor Hospitals? Why Hospital-Level and Patient-Level Care Quality-Outcome Relationships Can Differ.

PubMed

Finney, John W; Humphreys, Keith; Kivlahan, Daniel R; Harris, Alex H S

2016-04-01

Studies finding weak or nonexistent relationships between hospital performance on providing recommended care and hospital-level clinical outcomes raise questions about the value and validity of process of care performance measures. Such findings may cause clinicians to question the effectiveness of the care process presumably captured by the performance measure. However, one cannot infer from hospital-level results whether patients who received the specified care had comparable, worse or superior outcomes relative to patients not receiving that care. To make such an inference has been labeled the "ecological fallacy," an error that is well known among epidemiologists and sociologists, but less so among health care researchers and policy makers. We discuss such inappropriate inferences in the health care performance measurement field and illustrate how and why process measure-outcome relationships can differ at the patient and hospital levels. We also offer recommendations for appropriate multilevel analyses to evaluate process measure-outcome relationships at the patient and hospital levels and for a more effective role for performance measure bodies and research funding organizations in encouraging such multilevel analyses.

Does the organizational structure of health care systems influence care-seeking decisions? A qualitative analysis of Danish cancer patients' reflections on care-seeking

PubMed Central

Andersen, Rikke Sand; Vedsted, Peter; Olesen, Frede; Bro, Flemming; Søndergaard, Jens

2011-01-01

Objective The absence of a more significant improvement in cancer survival in countries such as the UK and Denmark may be partly rooted in delayed care-seeking among cancer patients. Past research on patient delay has mainly focused on patient characteristics (e.g. sociodemographic and psychological factors and symptom recognition) as causes of delayed care-seeking, while few studies have examined how the organizational structure of health care systems may influence patients’ reflections on seeking care. The aim of this study was to explore this relationship. Design The analysis presented is based on semi-structured interviews with 30 cancer patients and their families. Results The article raises two hypotheses on the relationship between structural elements of a health care system and people's reflections on seeking health care: (1) Gatekeeping introduces an asymmetrical relationship between the patient and the GP which potentially results in self-restricting care-seeking, (2) Continuity in the doctor–patient relationship may negatively influence patient reflections on access to health care, as the focus shifts from the medical issues of the consultation to reflections on how to properly interact with the GP and the system in which she/he is situated. Conclusion It is concluded that these hypotheses form a sound basis for further primary care research on how the organizational structure of health care systems influences patient reflections on access to medical care. PMID:21861597

Exploring Research Topics and Trends in Nursing-related Communication in Intensive Care Units Using Social Network Analysis.

PubMed

Son, Youn-Jung; Lee, Soo-Kyoung; Nam, SeJin; Shim, Jae Lan

2018-05-04

This study used social network analysis to identify the main research topics and trends in nursing-related communication in intensive care units. Keywords from January 1967 to June 2016 were extracted from PubMed using Medical Subject Headings terms. Social network analysis was performed using Gephi software. Research publications and newly emerging topics in nursing-related communication in intensive care units were classified into five chronological phases. After the weighting was adjusted, the top five keyword searches were "conflict," "length of stay," "nursing continuing education," "family," and "nurses." During the most recent phase, research topics included "critical care nursing," "patient handoff," and "quality improvement." The keywords of the top three groups among the 10 groups identified were related to "neonatal nursing and practice guideline," "infant or pediatric and terminal care," and "family, aged, and nurse-patient relations," respectively. This study can promote a systematic understanding of communication in intensive care units by identifying topic networks. Future studies are needed to conduct large prospective cohort studies and randomized controlled trials to verify the effects of patient-centered communication in intensive care units on patient outcomes, such as length of hospital stay and mortality.

Patient-reported quality indicators for osteoarthritis: a patient and public generated self-report measure for primary care.

PubMed

Blackburn, Steven; Higginbottom, Adele; Taylor, Robert; Bird, Jo; Østerås, Nina; Hagen, Kåre Birger; Edwards, John J; Jordan, Kelvin P; Jinks, Clare; Dziedzic, Krysia

2016-01-01

People with osteoarthritis desire high quality care, support and information. However, the quality of care for people with OA in general practice is not routinely collected. Quality Indicators can be used to benefit patients by measuring whether minimum standards of quality care are being met from a patient perspective. The aim of this study was to describe how a Research User Group (RUG) worked alongside researchers to co-produce a set of self-reported quality indicators for people with osteoarthritis when visiting their general practitioner or practice nurse (primary care). These were required in the MOSAICS study, which developed and evaluated a new model of supported self-management of OA to implement the NICE quality standards for OA. This article describes the public involvement in the MOSAICS study. This was 1) the co-development by RUG members and researchers of an Osteoarthritis Quality Indicators United Kingdom (OA QI (UK)) questionnaire for use in primary care, and 2) the comparison of the OA QI (UK) with a similar questionnaire developed in Norway. This study shows how important and effective a research user group can be in working with researchers in developing quality care indicators for osteoarthritis for use in a research study and, potentially, routine use in primary care. The questionnaire is intended to benefit patients by enabling the assessment of the quality of primary care for osteoarthritis from a patient's perspective. The OA QI (UK) has been used to examine differences in the quality of osteoarthritis care in four European countries. Background People with osteoarthritis (OA) desire high quality care, support and information about OA. However, the quality of care for people with OA in general practice is not routinely collected. Quality Indicators (QI) can be used to benefit patients by measuring whether minimum standards of quality care (e.g. NICE quality standards) are being met from a patient perspective. A Research User Group (RUG) worked with researchers to co-produce a set of self-report, patient-generated QIs for OA. The QIs were intended for use in the MOSAICS study, which developed and evaluated a new model of supported self-management of OA to implement the NICE guidelines. We report on 1) the co-development of the OA QI (UK) questionnaire for primary care; and 2) the comparison of the content of the OA QI (UK) questionnaire with a parallel questionnaire developed in Norway for the Musculoskeletal Pain in Ullensaker (MUST) study. Methods Researchers were invited to OA RUG meetings. Firstly, RUG members were asked to consider factors important to patients consulting their general practitioner (GP) for OA and then each person rated their five most important. RUG members then discussed these in relation to a systematic review of OA QIs in order to form a list of OA QIs from a patient perspective. RUG members suggested wording and response options for a draft OA QI (UK) questionnaire to assess the QIs. Finally RUG members commented on draft and final versions of the questionnaire and how it compared with a translated Norwegian OA-QI questionnaire. Results RUG members (5 males, 5 females; aged 52-80 years) attended up to four meetings. RUG members ranked 20 factors considered most important to patients consulting their GP for joint pain. Following discussion, a list of eleven patient-reported QIs for OA consultations were formed. RUG members then suggested the wording and response options of 16 draft items - four QIs were split into two or more questionnaire items to avoid multiple dimensions of care quality within a single item. On comparison of this to the Norwegian OA-QI questionnaire, RUG members commented that both questionnaires contained seven similar QIs. The RUG members and researchers agreed to adopt the Norwegian OA-QI wording for four of these items. RUG members also recommended adopting an additional seven items from the Norwegian OA-QI with some minor word changes to improve their suitability for patients in the UK. One other item from the draft OA QI (UK) questionnaire was retained and eight items were excluded, resulting in a 15-item final version. Conclusions This study describes the development of patient-reported quality indicators for OA primary care derived by members of a RUG group, working in partnership with the research team throughout the study. The OA QI (UK) supports the NICE quality standards for OA and they have been successfully used to assess the quality of OA consultations in primary care in the MOSAICS study. The OA QI (UK) has the potential for routine use in primary care to assess the quality of OA care provided to patients. Ongoing research using both the UK and Norwegian OA-QI questionnaires is assessing the self-reported quality of OA care in different European populations.

Systems Thinking and Patient Safety

DTIC Science & Technology

2005-01-01

1 Prologue Systems Thinking and Patient Safety Paul M. Schyve Patient safety is a prominent theme in health care delivery today. This should... patient safety and a willingness to invest in patient safety research. This volume—published by the Agency for Healthcare Research and Quality (AHRQ...The recent advent of the health care field’s emphasis on patient safety came at a favorable time. One or two decades earlier, our response would have

Reimbursement issues facing patients, providers, and payers.

PubMed

Antman, K

1993-11-01

Escalating costs of health care delivery and the current constraints imposed by the federal budget deficit seriously threaten to compromise patient care and innovative biomedical research. Recent third-party refusal to cover some patients treated in protocols has had considerable impact on trial research. In addition, reimbursement for conventional care sometimes has been refused if delivered as part of a study (e.g., MOPP therapy versus ABVD therapy) or for an indication that is not specifically cited on the Food and Drug Administration label. Who should cover the patient care costs of patients participating in clinical trials? One approach would have patients cover these costs themselves. A second approach is the reinstitution of patient care costs into research grants. A third possibility is that the pharmaceutical industry support patient care costs of clinical research. Historically, hospital expenses of patients participating in studies have been paid by health insurance policies. In the absence of a clinical trial, many patients would be treated with Food and Drug Administration-approved therapies despite a lack of substantial benefit. Such marginal treatments are compensated by third-party payers routinely. The current system is arbitrary and expensive, compromises research and development, and equates new treatment with no treatment. By refusing to reimburse the patient care costs of investigational therapy, third-party carriers are, in fact, making medical decisions. There is a growing and legitimate concern that the pace of clinical research will be impeded significantly at a time when many exciting developments will be ready for clinical trials. The molecular steps in carcinogenesis are being documented rapidly for common malignancies, such as colon cancer. Immunologic, biologic, and hormonal approaches, and emerging technologies, such as marrow transplant or antibody toxin conjugates, already are being studied in the clinic. Health policy legislation and decisions by the insurance industry have a direct impact on physicians, facilitating, or often impeding, the care physicians are able to provide. Who makes health policy decisions? Increasingly, these decisions are being made not by physicians, but by public health experts, economists, and, more recently, large industries grappling with the cost of providing insurance coverage (and its effects on competitive pricing in a world market). Therefore, physicians need to position themselves to influence the development of medical policy, particularly as it relates to the prevention, diagnosis, and treatment of patients with cancer.

Fifty Shades of Stigma: Exploring the Health Care Experiences of Kink-Oriented Patients.

PubMed

Waldura, Jessica F; Arora, Ishika; Randall, Anna M; Farala, John Paul; Sprott, Richard A

2016-12-01

The term kink describes sexual behaviors and identities encompassing bondage, discipline, domination and submission, and sadism and masochism (collectively known as BDSM) and sexual fetishism. Individuals who engage in kink could be at risk for health complications because of their sexual behaviors, and they could be vulnerable to stigma in the health care setting. However, although previous research has addressed experiences in mental health care, very little research has detailed the medical care experiences of kink-oriented patients. To broadly explore the health care experiences of kink-oriented patients using a community-engaged research approach. As part of the Kink Health Project, we gathered qualitative data from 115 kink-oriented San Francisco area residents using focus groups and interviews. Interview questions were generated in collaboration with a community advisory board. Data were analyzed using a thematic analysis approach. Themes relating to kink-oriented patients' experience with health and healthcare. Major themes included (i) kink and physical health, (ii) sociocultural aspects of kink orientation, (iii) the role of stigma in shaping health care interactions, (iv) coming out to health care providers, and (v) working toward a vision of kink-aware medical care. The study found that kink-oriented patients have genuine health care needs relating to their kink behaviors and social context. Most patients would prefer to be out to their health care providers so they can receive individualized care. However, fewer than half were out to their current provider, with anticipated stigma being the most common reason for avoiding disclosure. Patients are often concerned that clinicians will confuse their behaviors with intimate partner violence and they emphasized the consensual nature of their kink interactions. Like other sexual minorities, kink-oriented patients have a desire to engage with their health care providers in meaningful discussions about their health risks, their identities, and their communities without fear of being judged. Additional research is needed to explore the experiences of kink-oriented patients in other areas of the country and internationally. Copyright © 2016 International Society for Sexual Medicine. Published by Elsevier Inc. All rights reserved.

Patient-Reported Outcomes and Total Health Care Expenditure in Prediction of Patient Satisfaction: Results From a National Study.

PubMed

Hung, Man; Zhang, Weiping; Chen, Wei; Bounsanga, Jerry; Cheng, Christine; Franklin, Jeremy D; Crum, Anthony B; Voss, Maren W; Hon, Shirley D

2015-01-01

Health care quality is often linked to patient satisfaction. Yet, there is a lack of national studies examining the relationship between patient satisfaction, patient-reported outcomes, and medical expenditure. The aim of this study is to examine the contribution of physical health, mental health, general health, and total health care expenditures to patient satisfaction using a longitudinal, nationally representative sample. Using data from the 2010-2011 Medical Expenditure Panel Survey, analyses were conducted to predict patient satisfaction from patient-reported outcomes and total health care expenditures. The study sample consisted of adult participants (N=10,157), with sampling weights representative of 233.26 million people in the United States. The results indicated that patient-reported outcomes and total health care expenditure were associated with patient satisfaction such that higher physical and mental function, higher general health status, and higher total health care expenditure were associated with higher patient satisfaction. We found that patient-reported outcomes and total health care expenditure had a significant relationship with patient satisfaction. As more emphasis is placed on health care value and quality, this area of research will become increasingly needed and critical questions should be asked about what we value in health care and whether we can find a balance between patient satisfaction, outcomes, and expenditures. Future research should apply big data analytics to investigate whether there is a differential effect of patient-reported outcomes and medical expenditures on patient satisfaction across different medical specialties.

Teamwork and patient safety in dynamic domains of healthcare: a review of the literature.

PubMed

Manser, T

2009-02-01

This review examines current research on teamwork in highly dynamic domains of healthcare such as operating rooms, intensive care, emergency medicine, or trauma and resuscitation teams with a focus on aspects relevant to the quality and safety of patient care. Evidence from three main areas of research supports the relationship between teamwork and patient safety: (1) Studies investigating the factors contributing to critical incidents and adverse events have shown that teamwork plays an important role in the causation and prevention of adverse events. (2) Research focusing on healthcare providers' perceptions of teamwork demonstrated that (a) staff's perceptions of teamwork and attitudes toward safety-relevant team behavior were related to the quality and safety of patient care and (b) perceptions of teamwork and leadership style are associated with staff well-being, which may impact clinician' ability to provide safe patient care. (3) Observational studies on teamwork behaviors related to high clinical performance have identified patterns of communication, coordination, and leadership that support effective teamwork. In recent years, research using diverse methodological approaches has led to significant progress in team research in healthcare. The challenge for future research is to further develop and validate instruments for team performance assessment and to develop sound theoretical models of team performance in dynamic medical domains integrating evidence from all three areas of team research identified in this review. This will help to improve team training efforts and aid the design of clinical work systems supporting effective teamwork and safe patient care.

What Do Patients Want? Patient Preference in Wound Care

PubMed Central

Corbett, Lisa Q.; Ennis, William J.

2014-01-01

Patient preferences are statements made or actions taken by consumers that reflect their desirability of a range of health options. The concept occupies an increasingly prominent place at the center of healthcare reform, and is connected to all aspects of healthcare, including discovery, research, delivery, outcome, and payment. Patient preference research has focused on shared decisions, decisional aids, and clinical practice guideline development, with limited study in acute and chronic wound care populations. The wound care community has focused primarily on patient focused symptoms and quality of life measurement. With increasing recognition of wound care as a medical specialty and as a public health concern that consumes extensive resources, attention to the preferences of end-users with wounds is necessary. This article will provide an overview of related patient-centered concepts and begin to establish a framework for consideration of patient preference in wound care. PMID:25126474

Barriers in the implementation of a physical activity intervention in primary care settings: lessons learned.

PubMed

Josyula, Lakshmi K; Lyle, Roseann M

2013-01-01

Barriers encountered in implementing a physical activity intervention in primary health care settings, and ways to address them, are described in this paper. A randomized comparison trial was designed to examine the impact of health care providers' written prescriptions for physical activity, with or without additional physical activity resources, to adult, nonpregnant patients on preventive care or chronic disease monitoring visits. Following abysmal recruitment outcomes, the research protocol was altered to make it more appealing to all the participants, i.e., health care providers, office personnel, and patients. Various barriers--financial, motivational, and executive--to the implementation of health promotion interventions in primary health care settings were experienced and identified. These barriers have been classified by the different participants in the research process, viz., healthcare providers, administrative personnel, researchers, and patients. Some of the barriers identified were lack of time and reimbursement for health promotion activities, and inadequate practice capacity, for health care providers; increased time and labor demands for administrative personnel; constrained access to participants, and limited funding, for researchers; and superseding commitments, and inaccurate comprehension of the research protocol, for patients. Solutions suggested to overcome these barriers include financial support, e.g., funding for researchers, remuneration for health care organization personnel, reimbursement for providers, payment for participants, and free or subsidized postage, and use of health facilities; motivational strategies such as inspirational leadership, and contests within health care organizations; and partnerships, with other expert technical and creative entities, to improve the quality, efficiency, and acceptability of health promotion interventions.

Patients living with disabilities: The need for high-quality primary care.

PubMed

Lofters, Aisha; Guilcher, Sara; Maulkhan, Niraj; Milligan, James; Lee, Joseph

2016-08-01

To compare the potential risk factors for lower-quality primary care, the potential markers of unmet needs in primary care, and the willingness to participate in future research among primary care patients with versus without physical disabilities. A waiting room survey using a convenience sample. A family health team (FHT) in Kitchener-Waterloo, Ont, with a designated Mobility Clinic. A total of 40 patients seen at the FHT Mobility Clinic and 80 patients from the general patient population of the same FHT. Socioeconomic status and social capital, number of self-reported emergency department visits and hospitalizations in the preceding year, and willingness of the patients in the 2 groups to participate in future research studies. Patients from the Mobility Clinic were more than twice as likely to be receiving benefits or social assistance (75.0% vs 32.1%, P < .001), were twice as likely to report an annual household income of less than $40000 (58.6% vs 29.2%, P = .006), and were more likely to report their health status to be fair or poor (42.5% vs 16.2%, P = .002). Half of Mobility Clinic patients had visited the emergency department at least once in the preceding year, compared with 29.7% in the general patient population (P = .027). When asked if they would be willing to provide their health card number in the future so that it could be linked to health care data for research, 82.5% of Mobility Clinic patients agreed versus 55.0% of those in the general patient population (P = .004). In this study, patients with disabilities were at a social disadvantage compared with their peers without disabilities and were more likely to use the emergency department, suggesting that they had unmet health needs. Future research should continue to explore this patient population and to investigate if an interprofessional primary health care team approach focused on patients with disabilities can help to increase quality of care. Copyright© the College of Family Physicians of Canada.

The Development of a Nurse-Led Internet-Based Learning and Self-care Program for Cancer Patients With Symptoms of Anxiety and Depression-A Part of U-CARE.

PubMed

Hauffman, Anna; Alfonsson, Sven; Mattsson, Susanne; Forslund, Marina; Bill-Axelson, Anna; Nygren, Peter; Johansson, Birgitta

Having access to information about the disease and being encouraged to participate in self-care activities may reduce anxiety and depression symptoms in cancer patients. Internet-based interventions may be one way to support effective self-care strategies to improve emotional well-being and health-related quality of life. The aim of this study was to describe the development and acceptance of an Internet-based program intended to support cancer patients with anxiety and depression symptoms. A structured collaboration between patients, clinicians, and researchers was used to develop a theory- and evidence-based interactive health communication application (IHCA) based on Orem's self-care deficit nursing theory with influences from Bandura's social learning theory and psychoeducation. The result is an IHCA described as a Nurse-led, Internet-based Learning and Self-care program that helps patients to perform self-care using different types of material in interaction with patients and healthcare staff. The acceptance of the program is consistent with the results of similar studies. Collaboration between patients, clinicians, and researchers seems to be a fruitful approach in the development of an IHCA aiming to support cancer patients' self-care strategies. Well-designed intervention studies are needed to evaluate the effects of the IHCA. This article suggests a theoretical foundation for an IHCA and allows researchers and healthcare providers to take part in the discussion regarding format and content of IHCAs.

Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients', carers' and health professionals' experiences and further research questions.

PubMed

Baillie, Jessica; Anagnostou, Despina; Sivell, Stephanie; Van Godwin, Jordan; Byrne, Anthony; Nelson, Annmarie

2018-04-16

Symptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients' symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives' distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition. The PeolcPSP data (n = 1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke's approach. Five themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary. This study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families.

"Open your heart first of all": perspectives of holistic providers in Costa Rica about communication in the provision of health care.

PubMed

Geist-Martin, Patricia; Bell, Keely K

2009-10-01

Research documents how the care the holistic providers offer represents the quality communication that patients often do not receive from their biomedical providers. However, research investigating the perspectives of holistic providers concerning the role they see themselves playing in the provision of health is limited. This research explores the perceptions of holistic providers in Costa Rica about their communication with their patients. The results reveal two practices of communication-authenticating and integrating as central to providers' communication with patients in the provision of holistic health care. Providers describe their communication as an exploration of an anatomy of pain/suffering, including investigating the location, timing, length, intensity, and overall rhythm of the patient's condition and sense making that leads them to seek the care of a holistic provider. Most holistic providers see their role as being careful or full of care and suggest that they have an obligation to open their heart first of all.

Quality assessments for cancer centers in the European Union.

PubMed

Wind, Anke; Rajan, Abinaya; van Harten, Wim H

2016-09-07

Cancer centers are pressured to deliver high-quality services that can be measured and improved, which has led to an increase of assessments in many countries. A critical area of quality improvement is to improve patient outcome. An overview of existing assessments can help stakeholders (e.g., healthcare professionals, managers and policy makers) improve the quality of cancer research and care and lead to patient benefits. This paper presents key aspects of assessments undertaken by European cancer centers, such as: are assessments mandatory or voluntary? Do they focus on evaluating research, care or both? And are they international or national? A survey was sent to 33 cancer centers in 28 European Union member states. Participants were asked to score the specifics for each assessment that they listed. Based on the responses from 19 cancer centers from 18 member states, we found 109 assessments. The numbers have steadily increased from 1990's till 2015. Although, a majority of assessments are on patient-care aspects (n = 45), it is unclear how many of those include assessing patient benefits. Only few assessments cover basic research. There is an increasing trend towards mixed assessments (i.e., combining research and patient-care aspects) The need for assessments in cancer centers is increasing. To improve efforts in the quality of research and patient care and to prevent new assessments that "reinvent the wheel", it is advised to start comparative research into the assessments that are likely to bring patient benefits and improve patient outcome. Do assessments provide consistent and reliable information that create added value for all key stakeholders?

The safety climate in primary care (SAP-C) study: study protocol for a randomised controlled feasibility study.

PubMed

Lydon, Sinéad; Cupples, Margaret E; Hart, Nigel; Murphy, Andrew W; Faherty, Aileen; O'Connor, Paul

2016-01-01

Research on patient safety has focused largely on secondary care settings, and there is a dearth of knowledge relating to safety culture or climate, and safety climate improvement strategies, in the context of primary care. This is problematic given the high rates of usage of primary care services and the myriad of opportunities for clinical errors daily. The current research programme aimed to assess the effectiveness of an intervention derived from the Scottish Patient Safety Programme in Primary Care. The intervention consists of safety climate measurement and feedback and patient chart audit using the trigger review method. The purpose of this paper is to describe the background to this research and to present the methodology of this feasibility study in preparation for a future definitive RCT. The SAP-C study is a feasibility study employing a randomised controlled pretest-posttest design that will be conducted in 10 general practices in the Republic of Ireland and Northern Ireland. Five practices will receive the safety climate intervention over a 9-month period. The five practices in the control group will continue care as usual but will complete the GP-SafeQuest safety climate questionnaire at baseline (month 1) and at the terminus of the intervention (month 9). The outcomes of the study include process evaluation metrics (i.e. rates of participant recruitment and retention, rates of completion of safety climate measures, qualitative data regarding participants' perceptions of the intervention's potential efficacy, acceptability, and sustainability), patient safety culture in intervention and control group practices at posttest, and instances of undetected patient harm identified through patient chart audit using the trigger review method. The planned study investigates an intervention to improve safety climate in Irish primary care settings. The resulting data may inform our knowledge of the frequency of undetected patient safety incidents in primary care, may contribute to improved patient safety practices in primary care settings, and may inform future research on patient safety improvement initiatives.

Characteristics of Early Recipients of Patient-Centered Outcomes Research Institute Funding.

PubMed

Mazur, Stephany; Bazemore, Andrew; Merenstein, Daniel

2016-04-01

The Patient Protection and Affordable Care Act (ACA) is grounded in the goals of increasing access, improving quality, and reducing cost in the U.S. health care system. The ACA established the Patient-Centered Outcomes Research Institute (PCORI) to help accomplish these goals through patient-focused research. PCORI has a different charge than its federally supported counterpart, the National Institutes of Health (NIH)-to fund research that ultimately helps patients make better-informed health care decisions. The authors examined characteristics of the recipients and settings of the first six rounds of PCORI funding and differentiated PCORI and NIH funding patterns to analyze the extent to which PCORI is accomplishing the goals set out by the ACA. The authors performed a retrospective review of publicly available datasets, supplemented by a short questionnaire to funded PCORI principal investigators (PIs). The authors analyzed PCORI's first six funding cycles (2011-2014) and data on NIH funding patterns (2000-2013) to determine whether PCORI and NIH funding patterns differed by investigator, department, and institution, and whether PCORI had funded research in primary care settings. The authors found that PCORI is funding a more diverse cadre of PIs and biomedical departments than is NIH, but not a greater diversity of institutions, and that less than one-third of PCORI studies involve or are relevant to primary care--the largest patient care platform in the United States. As PCORI looks to be refunded, it is important that research funding is further evaluated and publicly acknowledged to assess whether goals are being achieved.

[An evaluation of the implementation of the 'Guidelines for oral care for patients dependent on care'].

PubMed

Hoeksema, A R; Meijer, H J A; Vissink, A; Raghoebar, G M; Visser, A

2016-05-01

75% of older people being admitted to a nursing home are found to have oral care problems that have not been treated. Moreover, the Healthcare Inspectorate [in the Netherlands] reports that oral care for patients who depend on care in nursing homes is inadequate. The 'Guidelines for oral care for patients dependent on care in nursing homes', developed in 2007, appears to have been inadequately implemented. The goal of this research was to gain insight into the implementation of these guidelines in healthcare organisations. To that end, a questionnaire was distributed among the staff of 74 nursing homes. An analysis of the data revealed that people are -familiar with the guidelines and that oral care providers are often available. Oral care providers, however, often do not have access to reasonable dental care facilities. Patients are, moreover, generally not screened and/or monitored in accordance with the guidelines. Finally, it seems that the instruction of nurses and care-providers is insufficient. Research supports the conclusion that the nursing home staff is well-acquainted with the 'Guidelines for oral care for patients dependent on care' but that implementation of the guidelines in daily practice leaves much to be desired.

[Detection of palliative care needs in an acute care hospital unit. Pilot study].

PubMed

Rodríguez-Calero, Miguel Ángel; Julià-Mora, Joana María; Prieto-Alomar, Araceli

2016-01-01

Previous to wider prevalence studies, we designed the present pilot study to assess concordance and time invested in patient evaluations using a palliative care needs assessment tool. We also sought to estimate the prevalence of palliative care needs in an acute care hospital unit. A cross-sectional study was carried out, 4 researchers (2 doctors and 2 nurses) independently assessed all inpatients in an acute care hospital unit in Manacor Hospital, Mallorca (Spain), using the validated tool NECPAL CCOMS-ICO©, measuring time invested in every case. Another researcher revised clinical recordings to analise the sample profile. Every researcher assessed 29 patients, 15 men and 14 women, mean age 74,03 ± 10.25 years. 4-observer concordance was moderate (Kappa 0,5043), tuning out to be higher between nurses. Mean time per patient evaluation was 1.9 to 7.72 minutes, depending on researcher. Prevalence of palliative care needs was 23,28%. Moderate concordance lean us towards multidisciplinary shared assessments as a method for future research. Avarage of time invested in evaluations was less than 8 minutes, no previous publications were identified regarding this variable. More than 20% of inpatients of the acute care unit were in need of palliative care. Copyright © 2015 Elsevier España, S.L.U. All rights reserved.

Is the qualitative research interview an acceptable medium for research with palliative care patients and carers?

PubMed Central

Gysels, Marjolein; Shipman, Cathy; Higginson, Irene J

2008-01-01

Background Contradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview. Methods A descriptive qualitative study. The data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study. Results The interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible. Conclusion The open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview. PMID:18435846

A qualitative study explaining nurses' perceptions of quality care for older people in long-term care settings in Ireland.

PubMed

Murphy, Kathy

2007-03-01

The aim of this research was to explore nurses' perceptions of the attributes of quality care and the factors that facilitate or hinder high-quality nursing care in long-term care. The quality of care for older people living in long-term care has been identified as an issue of concern in many nursing research studies. While many factors have been identified, it is difficult to determine key factors from current research. The study was a qualitative exploration of nurses' perceptions of quality care for older people and the factors that facilitate or hinder quality care. It involved 20 interviews with nurses. Respondents were asked to illustrate their accounts with examples from practice. This phase of the research was guided by the principles of hermeneutic phenomenology and the analysis process by Van Manen. The findings indicated that nurses perceived quality care for older people in Ireland as holistic, individualized and focused on promoting independence and choice. The research revealed, however, that care in many practice areas was not individualized, patient choice and involvement in decision making was limited and some areas engendered dependency. While staffing was identified as a factor which had an impact on the provision of patient choice, other issues, such as the motivation of staff, the role of the ward manager and the dominance of routine were also highlighted. There is a need to review organizational approaches to care, develop patient centred approaches to care and provide educational support for managers. This research focuses on care for older people; it helps practitioners identify key factors in the provision of quality care for older people living in long-term care.

Qualitative research in CKD: an overview of methods and applications.

PubMed

Tong, Allison; Winkelmayer, Wolfgang C; Craig, Jonathan C

2014-09-01

There recently has been a paradigm shift in health care policies and research toward greater patient centeredness. A core tenet of patient-centered care is that patients' needs, values, and preferences are respected in clinical decision making. Qualitative research methods are designed to generate insights about patients' priorities, values, and beliefs. However, in the past 5 years (2008-2013), only 23 (0.4%) of the 6,043 original articles published in the top 5 nephrology journals (assessed by impact factor) were qualitative studies. Given this observation, it seems important to promote awareness and better understanding within the nephrology community about qualitative research and how the findings can contribute to improving the quality and outcomes of care for patients with chronic kidney disease. This article outlines examples of how qualitative research can generate insight into the values and preferences of patients with chronic kidney disease, provides an overview of qualitative health research methods, and discusses practical applications for research, practice, and policy. Copyright © 2014 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.

Monitoring Outpatient Care

NASA Technical Reports Server (NTRS)

2003-01-01

Each year, health care costs for managing chronically ill patients increase as the life expectancy of Americans continues to grow. To handle this situation, many hospitals, doctors practices, and home care providers are turning to disease management, a system of coordinated health care interventions and communications, to improve outpatient care. By participating in daily monitoring programs, patients with congestive heart failure, chronic obstructive pulmonary disease, diabetes, and other chronic conditions requiring significant self-care are facing fewer emergency situations and hospitalizations. Cybernet Medical, a division of Ann Arbor, Michigan-based Cybernet Systems Corporation, is using the latest communications technology to augment the ways health care professionals monitor and assess patients with chronic diseases, while at the same time simplifying the patients interaction with technology. Cybernet s newest commercial product for this purpose evolved from research funded by NASA, the National Institute of Mental Health, and the Advanced Research Projects Agency. The research focused on the physiological assessment of astronauts and soldiers, human performance evaluation, and human-computer interaction. Cybernet Medical's MedStar Disease Management Data Collection System is an affordable, widely deployable solution for improving in-home-patient chronic disease management. The system's battery-powered and portable interface device collects physiological data from off-the-shelf instruments.

Patient Core Data Set. Standard for a longitudinal health/medical record.

PubMed

Renner, A L; Swart, J C

1997-01-01

Blue Chip Computers Company, in collaboration with Wright State University-Miami Valley College of Nursing and Health, with support from the Agency for Health Care Policy and Research, Public Health Service, completed Small Business innovative Research research to design a comprehensive integrated Patient information System. The Wright State University consultants undertook the development of a Patient Core Data Set (PCDS) in response to the lack of uniform standards of minimum data sets, and lack of standards in data transfer for continuity of care. The purpose of the Patient Core Data Set is to develop a longitudinal patient health record and medical history using a common set of standard data elements with uniform definitions and coding consistent with Health Level 7 (HL7) protocol and the American Society for Testing and Materials (ASTM) standards. The PCDS, intended for transfer across all patient-care settings, is essential information for clinicians, administrators, researchers, and health policy makers.

Experiences of patient-centredness with specialized community-based care: a systematic review and qualitative meta-synthesis.

PubMed

Winsor, S; Smith, A; Vanstone, M; Giacomini, M; Brundisini, F K; DeJean, D

2013-01-01

Specialized community-based care (SCBC) endeavours to help patients manage chronic diseases by formalizing the link between primary care providers and other community providers with specialized training. Many types of health care providers and community-based programs are employed in SCBC. Patient-centred care focuses on patients' psychosocial experience of health and illness to ensure that patients' care plans are modelled on their individual values, preferences, spirituality, and expressed needs. To synthesize qualitative research on patient and provider experiences of SCBC interventions and health care delivery models, using the core principles of patient-centredness. This report synthesizes 29 primary qualitative studies on the topic of SCBC interventions for patients with chronic conditions. Included studies were published between 2002 and 2012, and followed adult patients in North America, Europe, Australia, and New Zealand. Qualitative meta-synthesis was used to integrate findings across primary research studies. Three core themes emerged from the analysis: patients' health beliefs affect their participation in SCBC interventions;patients' experiences with community-based care differ from their experiences with hospital-based care;patients and providers value the role of nurses differently in community-based chronic disease care. Qualitative research findings are not intended to generalize directly to populations, although meta-synthesis across several qualitative studies builds an increasingly robust understanding that is more likely to be transferable. The diversity of interventions that fall under SCBC and the cross-interventional focus of many of the studies mean that findings might not be generalizable to all forms of SCBC or its specific components. Patients with chronic diseases who participated in SCBC interventions reported greater satisfaction when SCBC helped them better understand their diagnosis, facilitated increased socialization, provided them with a role in managing their own care, and assisted them in overcoming psychological and social barriers. More and more, to reduce bed shortages in hospitals, health care systems are providing programs called specialized community-based care (SCBC) to patients with chronic diseases. These SCBC programs allow patients with chronic diseases to be managed in the community by linking their family physicians with other community-based health care providers who have specialized training. This report looks at the experiences of patients and health care providers who take part in SCBC programs, focusing on psychological and social factors. This kind of lens is called patient-centred. Three themes came up in our analysis: patients' health beliefs affect how they take part in SCBC interventions; patients' experiences with care in the community differ from their experiences with care in the hospital; patients and providers value the role of nurses differently. The results of this analysis could help those who provide SCBC programs to better meet patients' needs.

Culture and spirituality: essential components of palliative care.

PubMed

Speck, Peter

2016-06-01

Palliative care advocates a holistic, multiprofessional approach to the care of people with life-threatening disease. In addition to the control of physical symptoms attention should also be paid to psychosocial, cultural and spiritual aspects of the patient's experience of illness. Guidance documents and research evidence reflect the complexity of the patient's journey and the need to regularly assess these areas of need over time. Cultural background can shape how patients respond to life-threatening illness, as can the beliefs held by the patients, whether religious or more broadly spiritual. Research evidence shows the importance of identifying and addressing cultural and spiritual aspects of care held by patients, families and staff. These are often neglected in clinical practice due to the focus on biomedical concerns and staff discomfort in engaging with beliefs and culture. Recent studies have highlighted gaps in the research, and some methodological difficulties and indicate many patients welcome healthcare staff enquiring about the importance of their beliefs and culture. Identifying research priorities is necessary to guide future research and strengthen the evidence base. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Individualising Chronic Care Management by Analysing Patients' Needs - A Mixed Method Approach.

PubMed

Timpel, P; Lang, C; Wens, J; Contel, J C; Gilis-Januszewska, A; Kemple, K; Schwarz, P E

2017-11-13

Modern health systems are increasingly faced with the challenge to provide effective, affordable and accessible health care for people with chronic conditions. As evidence on the specific unmet needs and their impact on health outcomes is limited, practical research is needed to tailor chronic care to individual needs of patients with diabetes. Qualitative approaches to describe professional and informal caregiving will support understanding the complexity of chronic care. Results are intended to provide practical recommendations to be used for systematic implementation of sustainable chronic care models. A mixed method study was conducted. A standardised survey (n = 92) of experts in chronic care using mail responses to open-ended questions was conducted to analyse existing chronic care programs focusing on effective, problematic and missing components. An expert workshop (n = 22) of professionals and scientists of a European funded research project MANAGE CARE was used to define a limited number of unmet needs and priorities of elderly patients with type 2 diabetes mellitus and comorbidities. This list was validated and ranked using a multilingual online survey (n = 650). Participants of the online survey included patients, health care professionals and other stakeholders from 56 countries. The survey indicated that current care models need to be improved in terms of financial support, case management and the consideration of social care. The expert workshop identified 150 patient needs which were summarised in 13 needs dimensions. The online survey of these pre-defined dimensions revealed that financial issues, education of both patients and professionals, availability of services as well as health promotion are the most important unmet needs for both patients and professionals. The study uncovered competing demands which are not limited to medical conditions. The findings emphasise that future care models need to focus stronger on individual patient needs and promote their active involvement in co-design and implementation. Future research is needed to develop new chronic care models providing evidence-based and practical implications for the regional care setting.

Implementing collaborative care for depression treatment in primary care: A cluster randomized evaluation of a quality improvement practice redesign

PubMed Central

2011-01-01

Background Meta-analyses show collaborative care models (CCMs) with nurse care management are effective for improving primary care for depression. This study aimed to develop CCM approaches that could be sustained and spread within Veterans Affairs (VA). Evidence-based quality improvement (EBQI) uses QI approaches within a research/clinical partnership to redesign care. The study used EBQI methods for CCM redesign, tested the effectiveness of the locally adapted model as implemented, and assessed the contextual factors shaping intervention effectiveness. Methods The study intervention is EBQI as applied to CCM implementation. The study uses a cluster randomized design as a formative evaluation tool to test and improve the effectiveness of the redesign process, with seven intervention and three non-intervention VA primary care practices in five different states. The primary study outcome is patient antidepressant use. The context evaluation is descriptive and uses subgroup analysis. The primary context evaluation measure is naturalistic primary care clinician (PCC) predilection to adopt CCM. For the randomized evaluation, trained telephone research interviewers enrolled consecutive primary care patients with major depression in the evaluation, referred enrolled patients in intervention practices to the implemented CCM, and re-surveyed at seven months. Results Interviewers enrolled 288 CCM site and 258 non-CCM site patients. Enrolled intervention site patients were more likely to receive appropriate antidepressant care (66% versus 43%, p = 0.01), but showed no significant difference in symptom improvement compared to usual care. In terms of context, only 40% of enrolled patients received complete care management per protocol. PCC predilection to adopt CCM had substantial effects on patient participation, with patients belonging to early adopter clinicians completing adequate care manager follow-up significantly more often than patients of clinicians with low predilection to adopt CCM (74% versus 48%%, p = 0.003). Conclusions Depression CCM designed and implemented by primary care practices using EBQI improved antidepressant initiation. Combining QI methods with a randomized evaluation proved challenging, but enabled new insights into the process of translating research-based CCM into practice. Future research on the effects of PCC attitudes and skills on CCM results, as well as on enhancing the link between improved antidepressant use and symptom outcomes, is needed. Trial Registration ClinicalTrials.gov: NCT00105820 PMID:22032247

The T.O.S.CA. Project: research, education and care.

PubMed

Bossone, Eduardo; Limongelli, Giuseppe; Malizia, Graziella; Ferrara, Francesco; Vriz, Olga; Citro, Rodolfo; Marra, Alberto Maria; Arcopinto, Michele; Bobbio, Emanuele; Sirico, Domenico; Caliendo, Luigi; Ballotta, Andrea; D'Andrea, Antonello; Frigiola, Alessandro; Isgaard, Jorgen; Saccà, Luigi; Antonio, Cittadini

2011-12-01

Despite recent and exponential improvements in diagnostic-therapeutic pathways, an existing "GAP" has been revealed between the "real world care" and the "optimal care" of patients with chronic heart failure (CHF). We present the T.O.S.CA. Project (Trattamento Ormonale dello Scompenso CArdiaco), an Italian multicenter initiative involving different health care professionals and services aiming to explore the CHF "metabolic pathophysiological model" and to improve the quality of care of HF patients through research and continuing medical education.

Affirmative and Responsible Health Care for People with Nonconforming Gender Identities and Expressions.

PubMed

Eckstrand, Kristen L; Ng, Henry; Potter, Jennifer

2016-11-01

Although recent changes in health care delivery have improved routine and gender-affirming care for transgender people, common approaches to care are still often based on a binary (i.e., male/female) gender framework that can make patients with gender-nonconforming (GNC) identities and expressions feel marginalized. Binary representation perpetuates invisibility, discrimination, and victimization-and subsequent poorer health-among GNC patients. In response, clinicians and health care systems should extend their efforts to provide gender-affirming and responsible care to GNC people. This article reviews terminology related to gender, the limited research-and necessary directions for future research-on GNC communities, and provides strategies for health care professionals and systems to ensure provision of gender-affirming and responsible care to GNC patients. © 2016 American Medical Association. All Rights Reserved.

Organization, execution and evaluation of the 2014 Academic Emergency Medicine consensus conference on Gender-Specific Research in Emergency Care - an executive summary.

PubMed

Safdar, Basmah; Greenberg, Marna R

2014-12-01

With the goal of reducing inequalities in patient care, the 2014 Academic Emergency Medicine (AEM) consensus conference, "Gender-Specific Research in Emergency Care: Investigate, Understand, and Translate How Gender Affects Patient Outcomes," convened a diverse group of researchers, clinicians, health care providers, patients, and representatives of federal agencies and policy-makers in Dallas, Texas, in May 2014. The executive and steering committees identified seven clinical domains as key to gender-specific emergency care: cardiovascular, neurological, trauma/injury, substance abuse, pain, mental health, and diagnostic imaging. The main aims of the conference were to: 1) summarize and consolidate current data related to sex- and gender-specific research for acute care and identify critical gender-related gaps in knowledge to inform an EM research agenda; 2) create a consensus-driven research agenda that advances sex- and gender-specific research in the prevention, diagnosis, and management of acute diseases and identify strategies to investigate them; and 3) build a multinational interdisciplinary consortium to disseminate and study the sex and gender medicine of acute conditions. Over a 2-year period, this collaborative network of stakeholders identified key areas where sex- and gender-specific research is most likely to improve clinical care and ultimately patient outcomes. The iterative consensus process culminated in a daylong conference on May 13, 2014, with a total of 133 registrants, with the majority being between ages 31 and 50 years (57%), females (71%), and whites (79%). Content experts led the consensus-building workshops at the conference and used the nominal group technique to consolidate consensus recommendations for priority research. In addition, panel sessions addressed funding mechanisms for gender-specific research as well as gender-specific regulatory challenges to product development and approval. This special issue of AEM reports the results of the 2014 consensus conference as well as related original research with the goal of bringing high-quality equitable care to male and female emergency patients. © 2014 by the Society for Academic Emergency Medicine.

Translational educational research: a necessity for effective health-care improvement.

PubMed

McGaghie, William C; Issenberg, S Barry; Cohen, Elaine R; Barsuk, Jeffrey H; Wayne, Diane B

2012-11-01

Medical education research contributes to translational science (TS) when its outcomes not only impact educational settings, but also downstream results, including better patient-care practices and improved patient outcomes. Simulation-based medical education (SBME) has demonstrated its role in achieving such distal results. Effective TS also encompasses implementation science, the science of health-care delivery. Educational, clinical, quality, and safety goals can only be achieved by thematic, sustained, and cumulative research programs, not isolated studies. Components of an SBME TS research program include motivated learners, curriculum grounded in evidence-based learning theory, educational resources, evaluation of downstream results, a productive research team, rigorous research methods, research resources, and health-care system acceptance and implementation. National research priorities are served from translational educational research. National funding priorities should endorse the contribution and value of translational education research.

Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper.

PubMed

Sivell, Stephanie; Prout, Hayley; Hopewell-Kelly, Noreen; Baillie, Jessica; Byrne, Anthony; Edwards, Michelle; Harrop, Emily; Noble, Simon; Sampson, Catherine; Nelson, Annmarie

2015-12-08

To present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care. Eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment. The main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers' training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life. The ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Patient and Physician Views about Protocolized Dialysis Treatment in Randomized Trials and Clinical Care.

PubMed

Kraybill, Ashley; Dember, Laura M; Joffe, Steven; Karlawish, Jason; Ellenberg, Susan S; Madden, Vanessa; Halpern, Scott D

2016-01-01

Pragmatic trials comparing standard-of-care interventions may improve the quality of care for future patients, but raise ethical questions about limitations on decisional autonomy. We sought to understand how patients and physicians view and respond to these questions in the contexts of pragmatic trials and of usual clinical care. We conducted scenario-based, semi-structured interviews with 32 patients with end-stage renal disease (ESRD) receiving maintenance hemodialysis in outpatient dialysis units and with 24 nephrologists. Each participant was presented with two hypothetical scenarios in which a protocolized approach to hemodialysis treatment time was adopted for the entire dialysis unit as part of a clinical trial or a new clinical practice. A modified grounded theory analysis revealed three major themes: 1) the value of research, 2) the effect of protocolized care on patient and physician autonomy, and 3) information exchange between patients and physicians, including the mechanism of consent. Most patients and physicians were willing to relinquish decisional autonomy and were more willing to relinquish autonomy for research purposes than in clinical care. Patients' concerns towards clinical trials were tempered by their desires for certainty for a positive outcome and for physician validation. Patients tended to believe that being informed about research was more important than the actual mechanism of consent, and most were content with being able to opt out from participating. This qualitative study suggests the general acceptability of a pragmatic clinical trial comparing standard-of-care interventions that limits decisional autonomy for nephrologists and patients receiving hemodialysis. Future studies are needed to determine whether similar findings would emerge among other patients and providers considering other standard-of-care trials.

Investing in nursing research in practice settings: a blueprint for building capacity.

PubMed

Jeffs, Lianne; Smith, Orla; Beswick, Susan; Maoine, Maria; Ferris, Ella

2013-12-01

Engaging clinical nurses in practice-based research is a cornerstone of professional nursing practice and a critical element in the delivery of high-quality patient care. Practising staff nurses are well suited to identify the phenomena and issues that are clinically relevant and appropriate for research. In response to the need to invest in and build capacity in nursing research, hospitals have developed creative approaches to spark interest in nursing research and to equip clinical nurses with research competencies. This paper outlines a Canadian hospital's efforts to build research capacity as a key strategy to foster efficacious, safe and cost-effective patient care practices. Within a multi-pronged framework, several strategies are described that collectively resulted in enhanced research and knowledge translation productivity aimed at improving the delivery of safe and high-quality patient care.

Managed care and inpatient mortality in adults: effect of primary payer.

PubMed

Hines, Anika L; Raetzman, Susan O; Barrett, Marguerite L; Moy, Ernest; Andrews, Roxanne M

2017-02-08

Because managed care is increasingly prevalent in health care finance and delivery, it is important to ascertain its effects on health care quality relative to that of fee-for-service plans. Some stakeholders are concerned that basing gatekeeping, provider selection, and utilization management on cost may lower quality of care. To date, research on this topic has been inconclusive, largely because of variation in research methods and covariates. Patient age has been the only consistently evaluated outcome predictor. This study provides a comprehensive assessment of the association between managed care and inpatient mortality for Medicare and privately insured patients. A cross-sectional design was used to examine the association between managed care and inpatient mortality for four common inpatient conditions. Data from the 2009 Healthcare Cost and Utilization Project State Inpatient Databases for 11 states were linked to data from the American Hospital Association Annual Survey Database. Hospital discharges were categorized as managed care or fee for service. A phased approach to multivariate logistic modeling examined the likelihood of inpatient mortality when adjusting for individual patient and hospital characteristics and for county fixed effects. Results showed different effects of managed care for Medicare and privately insured patients. Privately insured patients in managed care had an advantage over their fee-for-service counterparts in inpatient mortality for acute myocardial infarction, stroke, pneumonia, and congestive heart failure; no such advantage was found for the Medicare managed care population. To the extent that the study showed a protective effect of privately insured managed care, it was driven by individuals aged 65 years and older, who had consistently better outcomes than their non-managed care counterparts. Privately insured patients in managed care plans, especially older adults, had better outcomes than those in fee-for-service plans. Patients in Medicare managed care had outcomes similar to those in Medicare FFS. Additional research is needed to understand the role of patient selection, hospital quality, and differences among county populations in the decreased odds of inpatient mortality among patients in private managed care and to determine why this result does not hold for Medicare.

Physician Assistant | Center for Cancer Research

Cancer.gov

We are looking for a Physician Assistant to join our clinical team to help us provide continuity of care for patients enrolled in clinical trials. Duties include, but are not limited to, participating in clinical rounds and conferences, performing comprehensive health care assessments and examinations, and supporting inpatient and outpatient care of subjects enrolled in clinical trials.  Be part of our mission to solve the most important, challenging and neglected problems in modern cancer research and patient care.  The National Cancer Institute’s Center for Cancer Research is a world-leading cancer research organization working toward scientific breakthroughs at medicine’s cutting edge.   Our scientists can’t do it alone. It takes an extraordinary team of researchers, clinical experts and administrators to improve the lives of cancer patients and answer the most important questions in cancer biology and treatment.

Establishing research priorities relating to the long-term impact of TIA and minor stroke through stakeholder-centred consensus.

PubMed

Turner, Grace M; Backman, Ruth; McMullan, Christel; Mathers, Jonathan; Marshall, Tom; Calvert, Melanie

2018-01-01

What is the problem and why is this important? Mini-strokes are similar to full strokes, but symptoms last less than 24 h. Many people (up to 70%) have long-term problems after a mini-stroke, such as anxiety; depression; problems with brain functioning (like memory loss); and fatigue (feeling tired). However, the current healthcare pathway only focuses on preventing another stroke and care for other long-term problems is not routinely given. Without proper treatment, people with long-term problems after a mini-stroke could have worse quality of life and may find it difficult to return to work and their social activities. What is the aim of the research? We wanted to understand the research priorities of patients, health care professionals and key stakeholders relating to the long-term impact of mini-stroke. How did we address the problem? We invited patients, clinicians, researchers and other stakeholders to attend a meeting. At the meeting people discussed the issues relating to the long-term impact of mini-stroke and came to an agreement on their research priorities. There were three stages: (1) people wrote down their individual research suggestions; (2) in smaller groups people came to an agreement on what their top research questions were; and (3) the whole group agreed final research priorities. What did we find? Eleven people attended who were representatives for patients, GPs, stroke consultants, stroke nurses, psychologists, the Stroke Association (charity) and stroke researchers, The group agreed on eleven research questions which they felt were the most important to improve health and well-being for people who have had a mini-stroke.The eleven research questions encompass a range of categories, including: understanding the existing care patients receive (according to diagnosis and geographical location); exploring what optimal care post-TIA/minor stroke should comprise (identifying and treating impairments, information giving and support groups) and how that care should be delivered (clinical setting and follow-up pathway); impact on family members; and education/training for health care professionals. Background Clinical management after transient ischaemic attack (TIA) and minor stroke focuses on stroke prevention. However, evidence demonstrates that many patients experience ongoing residual impairments. Residual impairments post-TIA and minor stroke may affect patients' quality of life and return to work or social activities. Research priorities of patients, health care professionals and key stakeholders relating to the long-term impact of TIA and minor stroke are unknown. Methods Our objective was to establish the top shared research priorities relating to the long-term impact of TIA and minor stroke through stakeholder-centred consensus. A one-day priority setting consensus meeting took place with representatives from different stakeholder groups in October 2016 (Birmingham, UK). Nominal group technique was used to establish research priorities. This involved three stages: (i) gathering research priorities from individual stakeholders; (ii) interim prioritisation in three subgroups; and (iii) final priority setting. Results The priority setting consensus meeting was attended by 11 stakeholders. The individual stakeholders identified 34 different research priorities. During the interim prioritisation exercise, the three subgroups generated 24 unique research priorities which were discussed as a whole group. Following the final consensus discussion, 11 shared research priorities were unanimously agreed.The 11 research questions encompass a range of categories, including: understanding the existing care patients receive (according to diagnosis and geographical location); exploring what optimal care post-TIA/minor stroke should comprise (identifying and treating impairments, information giving and support groups) and how that care should be delivered (clinical setting and follow-up pathway); impact on family members; and education/training for health care professionals. Conclusions Eleven different research priorities were established through stakeholder-centred consensus. These research questions could usefully inform the research agenda and policy decisions for TIA and minor stroke. Inclusion of stakeholders in setting research priorities is important to increase the relevance of research and reduce research waste.

Informatics in neurocritical care: new ideas for Big Data.

PubMed

Flechet, Marine; Grandas, Fabian Güiza; Meyfroidt, Geert

2016-04-01

Big data is the new hype in business and healthcare. Data storage and processing has become cheap, fast, and easy. Business analysts and scientists are trying to design methods to mine these data for hidden knowledge. Neurocritical care is a field that typically produces large amounts of patient-related data, and these data are increasingly being digitized and stored. This review will try to look beyond the hype, and focus on possible applications in neurointensive care amenable to Big Data research that can potentially improve patient care. The first challenge in Big Data research will be the development of large, multicenter, and high-quality databases. These databases could be used to further investigate recent findings from mathematical models, developed in smaller datasets. Randomized clinical trials and Big Data research are complementary. Big Data research might be used to identify subgroups of patients that could benefit most from a certain intervention, or can be an alternative in areas where randomized clinical trials are not possible. The processing and the analysis of the large amount of patient-related information stored in clinical databases is beyond normal human cognitive ability. Big Data research applications have the potential to discover new medical knowledge, and improve care in the neurointensive care unit.

Evaluating care from a care ethical perspective:: A pilot study.

PubMed

Kuis, Esther E; Goossensen, Anne

2017-08-01

Care ethical theories provide an excellent opening for evaluation of healthcare practices since searching for (moments of) good care from a moral perspective is central to care ethics. However, a fruitful way to translate care ethical insights into measurable criteria and how to measure these criteria has as yet been unexplored: this study describes one of the first attempts. To investigate whether the emotional touchpoint method is suitable for evaluating care from a care ethical perspective. An adapted version of the emotional touchpoint interview method was used. Touchpoints represent the key moments to the experience of receiving care, where the patient recalls being touched emotionally or cognitively. Participants and research context: Interviews were conducted at three different care settings: a hospital, mental healthcare institution and care facility for older people. A total of 31 participants (29 patients and 2 relatives) took part in the study. Ethical considerations: The research was found not to be subject to the (Dutch) Medical Research Involving Human Subjects Act. A three-step care ethical evaluation model was developed and described using two touchpoints as examples. A focus group meeting showed that the method was considered of great value for partaking institutions in comparison with existing methods. Reflection and discussion: Considering existing methods to evaluate quality of care, the touchpoint method belongs to the category of instruments which evaluate the patient experience. The touchpoint method distinguishes itself because no pre-defined categories are used but the values of patients are followed, which is an essential issue from a care ethical perspective. The method portrays the insider perspective of patients and thereby contributes to humanizing care. The touchpoint method is a valuable instrument for evaluating care; it generates evaluation data about the core care ethical principle of responsiveness.

Client and family engagement in rehabilitation research: a framework for health care organizations.

PubMed

Anderson, James; Williams, Laura; Karmali, Amir; Beesley, Lori; Tanel, Nadia; Doyle-Thomas, Krissy; Sheps, Gideon; Chau, Tom

2018-04-01

To describe the development and implementation of an organizational framework for client and family-centered research. Case report. While patient-centered care is now well established, patient-centered research remains underdeveloped. This is particularly true at the organizational level (e.g., hospital based research institutes). In this paper we describe the development of an organizational framework for client and family centered research at Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada. It is our hope that, by sharing our framework other research institutions can learn from our experience and develop their own research patient/client/family engagement programs. Implications for rehabilitation Family engagement in rehabilitation research •Rehabilitation research is crucial to the development and improvement of rehabilitative care. •The relevance, appropriateness, and accountability of research to patients, clients and families could be improved. •Engaging clients and families as partners in all aspects of the research process is one way to address this problem. •In this paper, we describe a framework for engaging clients and families in research at the organizational level.

Patient-Reported Outcomes and Total Health Care Expenditure in Prediction of Patient Satisfaction: Results From a National Study

PubMed Central

Zhang, Weiping; Chen, Wei; Bounsanga, Jerry; Cheng, Christine; Franklin, Jeremy D; Crum, Anthony B; Voss, Maren W; Hon, Shirley D

2015-01-01

Background Health care quality is often linked to patient satisfaction. Yet, there is a lack of national studies examining the relationship between patient satisfaction, patient-reported outcomes, and medical expenditure. Objective The aim of this study is to examine the contribution of physical health, mental health, general health, and total health care expenditures to patient satisfaction using a longitudinal, nationally representative sample. Methods Using data from the 2010-2011 Medical Expenditure Panel Survey, analyses were conducted to predict patient satisfaction from patient-reported outcomes and total health care expenditures. The study sample consisted of adult participants (N=10,157), with sampling weights representative of 233.26 million people in the United States. Results The results indicated that patient-reported outcomes and total health care expenditure were associated with patient satisfaction such that higher physical and mental function, higher general health status, and higher total health care expenditure were associated with higher patient satisfaction. Conclusions We found that patient-reported outcomes and total health care expenditure had a significant relationship with patient satisfaction. As more emphasis is placed on health care value and quality, this area of research will become increasingly needed and critical questions should be asked about what we value in health care and whether we can find a balance between patient satisfaction, outcomes, and expenditures. Future research should apply big data analytics to investigate whether there is a differential effect of patient-reported outcomes and medical expenditures on patient satisfaction across different medical specialties. PMID:27227131

Bedside Reporting: Protocols for Improving Patient Care.

PubMed

Ferguson, Teresa D; Howell, Teresa L

2015-12-01

Bedside reporting continues to gain much attention and is being investigated to support the premise that "hand-off" communications enhance efficacy in delivery of patient care. Patient inclusion in shift reports enhances good patient outcomes, increased satisfaction with care delivery, enhanced accountability for nursing professionals, and improved communications between patients and their direct care providers. This article discusses the multiple benefits of dynamic dialogue between patients and the health care team, challenges often associated with bedside reporting, and protocols for managing bedside reporting with the major aim of improving patient care. Nursing research supporting the concept of bedside reporting is examined. Copyright © 2015 Elsevier Inc. All rights reserved.

Improving patient care trajectories: an innovative quasi-experimental research method for health services.

PubMed

Campos, Eneida Rached; Moreira-Filho, Djalma de Carvalho; Silva, Marcos Tadeu Nolasco da

2018-05-01

Scores to predict treatment outcomes have earned a well-deserved place in healthcare practice. However, when used to help achieve excellence in the care of a given disease, scores should also take into account organizational and social aspects. This article aims to create scores to obtain key variables and its application in the management of care of a given disease. We present a method called Epidemiological Planning for Patient Care Trajectory (PELC) and its application in a research of HIV pediatric patients. This case study is presented by means of two studies. The first study deals with the development of the method PELC. The second is HIV Pediatric case-control study based on PELC method. HIV pediatric research - the first practical PELC application - found these four key variables to the individual quality level care trajectories: adherence to ART, attending at least one appointment with the otolaryngologist, attending at least one appointment with social services, and having missed one or more routine appointments. We believe PELC method can be used in researches about any kind of care trajectories, contributing to quality level advancements in health services, with emphasis on patient safety and equity in healthcare.

Patient and Physician Views about Protocolized Dialysis Treatment in Randomized Trials and Clinical Care

PubMed Central

Kraybill, Ashley; Dember, Laura M.; Joffe, Steven; Karlawish, Jason; Ellenberg, Susan S.; Madden, Vanessa; Halpern, Scott D.

2016-01-01

Background Pragmatic trials comparing standard-of-care interventions may improve the quality of care for future patients, but raise ethical questions about limitations on decisional autonomy. We sought to understand how patients and physicians view and respond to these questions in the contexts of pragmatic trials and of usual clinical care. Methods We conducted scenario-based, semi-structured interviews with 32 patients with end-stage renal disease (ESRD) receiving maintenance hemodialysis in outpatient dialysis units and with 24 nephrologists. Each participant was presented with two hypothetical scenarios in which a protocolized approach to hemodialysis treatment time was adopted for the entire dialysis unit as part of a clinical trial or a new clinical practice. Results A modified grounded theory analysis revealed three major themes: 1) the value of research, 2) the effect of protocolized care on patient and physician autonomy, and 3) information exchange between patients and physicians, including the mechanism of consent. Most patients and physicians were willing to relinquish decisional autonomy and were more willing to relinquish autonomy for research purposes than in clinical care. Patients’ concerns towards clinical trials were tempered by their desires for certainty for a positive outcome and for physician validation. Patients tended to believe that being informed about research was more important than the actual mechanism of consent, and most were content with being able to opt out from participating. Conclusions This qualitative study suggests the general acceptability of a pragmatic clinical trial comparing standard-of-care interventions that limits decisional autonomy for nephrologists and patients receiving hemodialysis. Future studies are needed to determine whether similar findings would emerge among other patients and providers considering other standard-of-care trials. PMID:27833931

The Value of Nursing Care: A Concept Analysis.

PubMed

Dick, Tracey K; Patrician, Patricia A; Loan, Lori A

2017-10-01

To report an analysis of the concept of value of nursing care. Value-based health care delivery and reimbursement models are focused on value as a product of quality and cost. Nursing care provides tangible and intangible contributions to patient and organizational outcomes. The nursing profession must be able to proactively and effectively communicate the value of nursing care. Concept analysis. Thirty-five separate sources were chosen from database searches of CINAHL Complete and ABI/INFORM Complete. Key terms utilized for the search were "nursing value" OR "nursing care value" OR "value of nursing". Caron and Bowers' (2000) dimensional analysis method was used as a guide for the project. Dimensions identified from this concept analysis included: (a) economic, (b) relational, and (c) societal. Direct care nurses experience the relational and societal dimensions of the value of nursing care. Patients and/or families experience the relational dimension of value in nursing care. Health care administrators, third-party payers, and nurse researchers interpret value from the economic dimension. Future nursing research should better quantify the economic value of nursing care. Qualitative research which focuses on how patients and families experience the value of nursing care would also contribute to further refinement of this concept. © 2017 Wiley Periodicals, Inc.

Engaging the Public to Identify Opportunities to Improve Critical Care: A Qualitative Analysis of an Open Community Forum

PubMed Central

Potestio, Melissa L.; Boyd, Jamie M.; Bagshaw, Sean M.; Heyland, Daren; Oxland, Peter; Doig, Christopher J.; Zygun, Dave; Stelfox, Henry T.

2015-01-01

Objective To engage the public to understand how to improve the care of critically ill patients. Design A qualitative content analysis of an open community forum (Café Scientifique). Setting Public venue in Calgary, Alberta, Canada. Participants Members of the general public including patients, families of patients, health care providers, and members of the community at large. Methods A panel of researchers, decision-makers, and a family member led a Café Scientifique, an informal dialogue between the populace and experts, over three-hours to engage the public to understand how to improve the care of critically ill patients. Conventional qualitative content analysis was used to analyze the data. The inductive analysis occurred in three phases: coding, categorizing, and developing themes. Results Thirty-eight members of the public (former ICU patients, family members of patients, providers, community members) attended. Participants focused the discussion and provided concrete suggestions for improvement around communication (family as surrogate voice, timing of conversations, decision tools) and provider well-being and engagement, as opposed to medical interventions in critical care. Conclusions Café participants believe patient and family centered care is important to ensure high-quality care in the ICU. A Café Scientifique is a valuable forum to engage the public to contribute to priority setting areas for research in critical care, as well as a platform to share lived experience. Research stakeholders including health care organizations, governments, and funding organizations should provide more opportunities for the public to engage in meaningful conversations about how to best improve healthcare. PMID:26580406

Engaging the Public to Identify Opportunities to Improve Critical Care: A Qualitative Analysis of an Open Community Forum.

PubMed

Potestio, Melissa L; Boyd, Jamie M; Bagshaw, Sean M; Heyland, Daren; Oxland, Peter; Doig, Christopher J; Zygun, Dave; Stelfox, Henry T

2015-01-01

To engage the public to understand how to improve the care of critically ill patients. A qualitative content analysis of an open community forum (Café Scientifique). Public venue in Calgary, Alberta, Canada. Members of the general public including patients, families of patients, health care providers, and members of the community at large. A panel of researchers, decision-makers, and a family member led a Café Scientifique, an informal dialogue between the populace and experts, over three-hours to engage the public to understand how to improve the care of critically ill patients. Conventional qualitative content analysis was used to analyze the data. The inductive analysis occurred in three phases: coding, categorizing, and developing themes. Thirty-eight members of the public (former ICU patients, family members of patients, providers, community members) attended. Participants focused the discussion and provided concrete suggestions for improvement around communication (family as surrogate voice, timing of conversations, decision tools) and provider well-being and engagement, as opposed to medical interventions in critical care. Café participants believe patient and family centered care is important to ensure high-quality care in the ICU. A Café Scientifique is a valuable forum to engage the public to contribute to priority setting areas for research in critical care, as well as a platform to share lived experience. Research stakeholders including health care organizations, governments, and funding organizations should provide more opportunities for the public to engage in meaningful conversations about how to best improve healthcare.

Validation of a patient-centered culturally sensitive health care office staff inventory.

PubMed

Tucker, Carolyn M; Wall, Whitney; Marsiske, Michael; Nghiem, Khanh; Roncoroni, Julia

2015-09-01

Research suggests that patient-perceived culturally sensitive health care encompasses multiple components of the health care delivery system including the cultural sensitivity of front desk office staff. Despite this, research on culturally sensitive health care focuses almost exclusively on provider behaviors, attitudes, and knowledge. This is due in part to the paucity of instruments available to assess the cultural sensitivity of front desk office staff. Thus, the objective of the present study is to determine the psychometric properties of the pilot Tucker-Culturally Sensitive Health Care Office Staff Inventory-Patient Form (T-CSHCOSI-PF), which is an instrument designed to enable patients to evaluate the patient-defined cultural sensitivity of their front desk office staff. A sample of 1648 adult patients was recruited by staff at 67 health care sites across the United States. These patients anonymously completed the T-CSHCOSI-PF, a demographic data questionnaire, and a patient satisfaction questionnaire. Findings Confirmatory factor analyses of the TCSHCOSI-PF revealed that this inventory has two factors with high internal consistency reliability and validity (Cronbach's αs=0.97 and 0.95). It is concluded that the T-CSHCOSI-PF is a psychometrically strong and useful inventory for assessing the cultural sensitivity of front desk office staff. This inventory can be used to support culturally sensitive health care research, evaluate the job performance of front desk office staff, and aid in the development of trainings designed to improve the cultural sensitivity of these office staff.

EurOOHnet-the European research network for out-of-hours primary health care.

PubMed

Huibers, Linda; Philips, Hilde; Giesen, Paul; Remmen, Roy; Christensen, Morten Bondo; Bondevik, Gunnar Tschudi

2014-09-01

European countries face similar challenges in the provision of health care. Demographic factors like ageing, population growth, changing patient behaviour, and lack of work force lead to increasing demands, costs, and overcrowding of out-of-hours (OOH) care (i.e. primary care services, emergency departments (EDs), and ambulance services). These developments strain services and imply safety risks. In the last few decades, countries have been re-organizing their OOH primary health care services. AIM AND SCOPE OF THE NETWORK: We established a European research network for out-of-hours primary health care (EurOOHnet), which aims to transfer knowledge, share experiences, and conduct research. Combining research competencies and integrating results can generate a profound information flow to European researchers and decision makers in health policy, contributing towards feasible and high-quality OOH care. It also contributes to a more comparable performance level within European regions. CONDUCTED RESEARCH PROJECTS: The European research network aims to conduct mutual research projects. At present, three projects have been accomplished, among others concerning the diagnostic scope in OOH primary care services and guideline adherence for diagnosis and treatment of cystitis in OOH primary care. Future areas of research will be organizational models for OOH care; appropriate use of the OOH services; quality of telephone triage; quality of medical care; patient safety issues; use of auxiliary personnel; collaboration with EDs and ambulance care; and the role of GPs in OOH care.

State of the Science of Spirituality and Palliative Care Research Part II: Screening, Assessment, and Interventions.

PubMed

Balboni, Tracy A; Fitchett, George; Handzo, George F; Johnson, Kimberly S; Koenig, Harold G; Pargament, Kenneth I; Puchalski, Christina M; Sinclair, Shane; Taylor, Elizabeth J; Steinhauser, Karen E

2017-09-01

The State of the Science in Spirituality and Palliative Care was convened to address the current landscape of research at the intersection of spirituality and palliative care and to identify critical next steps to advance this field of inquiry. Part II of the SOS-SPC report addresses the state of extant research and identifies critical research priorities pertaining to the following questions: 1) How do we assess spirituality? 2) How do we intervene on spirituality in palliative care? And 3) How do we train health professionals to address spirituality in palliative care? Findings from this report point to the need for screening and assessment tools that are rigorously developed, clinically relevant, and adapted to a diversity of clinical and cultural settings. Chaplaincy research is needed to form professional spiritual care provision in a variety of settings, and outcomes assessed to ascertain impact on key patient, family, and clinical staff outcomes. Intervention research requires rigorous conceptualization and assessments. Intervention development must be attentive to clinical feasibility, incorporate perspectives and needs of patients, families, and clinicians, and be targeted to diverse populations with spiritual needs. Finally, spiritual care competencies for various clinical care team members should be refined. Reflecting those competencies, training curricula and evaluation tools should be developed, and the impact of education on patient, family, and clinician outcomes should be systematically assessed. Published by Elsevier Inc.

Patient's and health care provider's perspectives on music therapy in palliative care - an integrative review.

PubMed

Schmid, W; Rosland, J H; von Hofacker, S; Hunskår, I; Bruvik, F

2018-02-20

The use of music as therapy in multidisciplinary end-of-life care dates back to the 1970s and nowadays music therapy (MT) is one of the most frequently used complementary therapy in in-patient palliative care in the US. However existing research investigated music therapy's potential impact mainly from one perspective, referring to either a quantitative or qualitative paradigm. The aim of this review is to provide an overview of the users' and providers' perspectives on music therapy in palliative care within one research article. A systematic literature search was conducted using several databases supplemented with a hand-search of journals between November 1978 and December 2016. Inclusion criteria were: Music therapy with adults in palliative care conducted by a certified music therapist. Both quantitative and qualitative studies in English, German or a Scandinavian language published in peer reviewed journals were included. We aimed to identify and discuss the perspectives of both patients and health care providers on music therapy's impact in palliative care to forward a comprehensive understanding of it's effectiveness, benefits and limitations. We investigated themes mentioned by patients within qualitative studies, as well as commonly chosen outcome measures in quantitative research. A qualitative approach utilizing inductive content analysis was carried out to analyze and categorize the data. Twelve articles, reporting on nine quantitative and three qualitative research studies were included. Seven out of the nine quantitative studies investigated pain as an outcome. All of the included quantitative studies reported positive effects of the music therapy. Patients themselves associated MT with the expression of positive as well as challenging emotions and increased well-being. An overarching theme in both types of research is a psycho-physiological change through music therapy. Both quantitative as well as qualitative research showed positive changes in psycho-physiological well-being. The integration of the users´ and providers´ perspectives within future research applicable for example in mixed-methods designs is recommended.

Need, access, and the reach of integrated care: A typology of patients.

PubMed

Bridges, Ana J; Villalobos, Bianca T; Anastasia, Elizabeth A; Dueweke, Aubrey R; Gregus, Samantha J; Cavell, Timothy A

2017-06-01

This paper is a report on a study exploring a potential typology of primary care patients referred for integrated behavioral health care (IBHC) services. We considered whether primary care patients could be grouped into meaningful clusters based on perceived need for behavioral health services, barriers to accessing care, and past-year service utilization. We also described the development of a working partnership between our university-based research team and a federally qualified health center (FQHC). A total of 105 adult primary care patients referred for same-day behavioral health appointments completed a brief self-report questionnaire assessing past-year behavioral health concerns, service utilization, and perceived barriers to utilization. Hierarchical and k-means cluster analyses revealed 3 groups: (a) Well-Served patients, characterized by high perceived need for services, high service use, and low barriers to service use (40%); (b) Underserved patients, characterized by high perceived need, low service utilization, and high barriers to service use (20%); and (c) Subclinical patients, characterized by low perceived need, low service use, and low barriers to service use (20%). Clusters were reliably differentiated by age, primary language, insurance status, and global functioning. We found primary care patients could be grouped into 3 categories and that 60% (Underserved and Subclinical) represented groups less commonly seen in traditional mental health (MH) settings. IBHC may be a promising approach for extending the reach of MH care, and partnerships between FQHCs and university-based research teams may be a promising approach for conducting research on the IBHC service-delivery model. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Research priorities in nursing--a Delphi study among Swedish nurses.

PubMed

Bäck-Pettersson, Siv; Hermansson, Evelyn; Sernert, Ninni; Björkelund, Cecilia

2008-08-01

The main aim was to illuminate essential areas for future patient-related nursing research. The secondary aim was to stimulate nurses to explore important research areas based on clinical practice. Priority-setting is regarded as one of the main strategies to ensure excellence in nursing science, to direct nursing research and develop healthcare practice accordingly as well as strengthening the nursing profession's research commitment. A three-round Delphi survey was conducted. A panel of 118 clinicians, in various nursing, teaching and administrative positions participated. Ninety-five panel members completed all three rounds (81%). The majority were female, aged 25-67 (mean 49) years, with an average of 23 (range 1-40) years in nursing, working in hospitals (42%), primary healthcare centres, community care (44%) and administration/education (14%). Sixty-six per cent had graduate diplomas and 34% had an academic education, ranging from bachelors' to doctoral degrees. Three hundred and eighty nursing research areas were identified, evaluated and ranked using content analysis and descriptive statistics. The participants' prioritized research aimed at preserving humanistic values and developing cross-organisational collaboration in the healthcare system. Nursing research aimed at preserving human dignity in geriatric care, respectful transfers, continuity of care and exploring the characteristics of a caring encounter were ranked high relative to the patient welfare, to the healthcare organisation and to the nursing profession. Nurses prioritize research that will improve clinical practice, assure patients' wellbeing and a caring environment. Nurses can reach consensus on the objectives of patient-related nursing research despite differences in age, workplace, educational period and level of academic degree. Relevance to clinical practice. When prioritizing important areas for patient-related nursing research, informed nursing practitioners' commitment initiates knowledge development within clinical practice from a nursing science perspective as well as expanding cross-professional and cross-organisational collaboration.

The Theory of Value-Based Payment Incentives and Their Application to Health Care.

PubMed

Conrad, Douglas A

2015-12-01

To present the implications of agency theory in microeconomics, augmented by behavioral economics, for different methods of value-based payment in health care; and to derive a set of future research questions and policy recommendations based on that conceptual analysis. Original literature of agency theory, and secondarily behavioral economics, combined with applied research and empirical evidence on the application of those principles to value-based payment. Conceptual analysis and targeted review of theoretical research and empirical literature relevant to value-based payment in health care. Agency theory and secondarily behavioral economics have powerful implications for design of value-based payment in health care. To achieve improved value-better patient experience, clinical quality, health outcomes, and lower costs of care-high-powered incentives should directly target improved care processes, enhanced patient experience, and create achievable benchmarks for improved outcomes. Differing forms of value-based payment (e.g., shared savings and risk, reference pricing, capitation, and bundled payment), coupled with adjunct incentives for quality and efficiency, can be tailored to different market conditions and organizational settings. Payment contracts that are "incentive compatible"-which directly encourage better care and reduced cost, mitigate gaming, and selectively induce clinically efficient providers to participate-will focus differentially on evidence-based care processes, will right-size and structure incentives to avoid crowd-out of providers' intrinsic motivation, and will align patient incentives with value. Future research should address the details of putting these and related principles into practice; further, by deploying these insights in payment design, policy makers will improve health care value for patients and purchasers. © Health Research and Educational Trust.

Researching Reflexively With Patients and Families: Two Studies Using Video-Reflexive Ethnography to Collaborate With Patients and Families in Patient Safety Research.

PubMed

Collier, Aileen; Wyer, Mary

2016-06-01

Patient safety research has to date offered few opportunities for patients and families to be actively involved in the research process. This article describes our collaboration with patients and families in two separate studies, involving end-of-life care and infection control in acute care. We used the collaborative methodology of video-reflexive ethnography, which has been primarily used with clinicians, to involve patients and families as active participants and collaborators in our research. The purpose of this article is to share our experiences and findings that iterative researcher reflexivity in the field was critical to the progress and success of each study. We present and analyze the complexities of reflexivity-in-the-field through a framework of multilayered reflexivity. We share our lessons here for other researchers seeking to actively involve patients and families in patient safety research using collaborative visual methods. © The Author(s) 2015.

Changes in research on language barriers in health care since 2003: A cross-sectional review study.

PubMed

Schwei, Rebecca J; Del Pozo, Sam; Agger-Gupta, Niels; Alvarado-Little, Wilma; Bagchi, Ann; Chen, Alice Hm; Diamond, Lisa; Gany, Francesca; Wong, Doreena; Jacobs, Elizabeth A

2016-02-01

Understanding how to mitigate language barriers is becoming increasingly important for health care providers around the world. Language barriers adversely affect patients in their access to health services; comprehension and adherence; quality of care; and patient and provider satisfaction. In 2003, the United States (US) government made a major change in national policy guidance that significantly affected limited English proficient patients' ability to access language services. The objectives of this paper are to describe the state of the language barriers literature inside and outside the US since 2003 and to compare the research that was conducted before and after a national policy change occurred in the US. We hypothesize that language barrier research would increase inside and outside the US but that the increase in research would be larger inside the US in response to this national policy change. We reviewed the research literature on language barriers in health care and conducted a cross sectional analysis by tabulating frequencies for geographic location, language group, methodology, research focus and specialty and compared the literature before and after 2003. Our sample included 136 studies prior to 2003 and 426 studies from 2003 to 2010. In the 2003-2010 time period there was a new interest in studying the providers' perspective instead of or in addition to the patients' perspective. The methods remained similar between periods with greater than 60% of studies being descriptive and 12% being interventions. There was an increase in research on language barriers inside and outside the US and we believe this was larger due to the change in the national policy. We suggest that researchers worldwide should move away from simply documenting the existence of language barriers and should begin to focus their research on documenting how language concordant care influences patient outcomes, providing evidence for interventions that mitigate language barriers, and evaluating the cost effectiveness of providing language concordant care to patients with language barriers. We think this is possible if funding agencies around the world begin to request proposals for these types of research studies. Together, we can begin document meaningful ways to provide high quality health care to patients with language barriers. Copyright © 2015 Elsevier Ltd. All rights reserved.

Hearing the Silenced Voices of Underserved Women -The Role of Qualitative Research in Gynecologic and Reproductive Care

PubMed Central

Lawson, Angela K.; Marsh, Erica E.

2017-01-01

Summary for Indexing In order to provide effective evidence-based health care to women, rigorous research that examines women’s lived experiences in their own voices in needed. However, clinical health research has often excluded the experiences of women and minority patient populations. Further, clinical research has often relied on quantitative research strategies; this provides an interesting but limited understanding of women’s health experiences and hinders the provision of effective patient-centered care. In this review, we define qualitative research and its unique contributions to research, and provide examples of how qualitative research has given insights into the reproductive health perspectives and behaviors of underserved women. PMID:28160888

Prevalence and Nature of Spiritual Distress Among Palliative Care Patients in India.

PubMed

Gielen, Joris; Bhatnagar, Sushma; Chaturvedi, Santosh K

2017-04-01

In palliative care research, little attention has been paid to the empirical study of spirituality in patients in non-Western countries. This study describes the prevalence and nature of spiritual distress among Indian palliative care patients. Data from 300 adult cancer patients who had completed a questionnaire with 36 spirituality items were analyzed. Spirituality was shaped by the Indian religious and economic context. A latent class analysis resulted in three clusters: trustful patients (46.4 %), spiritually distressed patients (17.4 %), and patients clinging to divine support (36.2 %). After regression, the clusters were found to be associated with pain scores (p < .001), gender (p = .034), and educational level (p < .006). More than half of the patients would benefit from spiritual counselling. More research and education on spirituality in Indian palliative care is urgently required.

ED services: the impact of caring behaviors on patient loyalty.

PubMed

Liu, Sandra S; Franz, David; Allen, Monette; Chang, En-Chung; Janowiak, Dana; Mayne, Patricia; White, Ruth

2010-09-01

This article describes an observational study of caring behaviors in the emergency departments of 4 Ascension Health hospitals and the impact of these behaviors on patient loyalty to the associated hospital. These hospitals were diverse in size and geography, representing 3 large urban community hospitals in metropolitan areas and 1 in a midsized city. Research assistants from Purdue University (West Lafayette, IN) conducted observations at the first study site and validated survey instruments. The Purdue research assistants trained contracted observers at the subsequent study sites. The research assistants conducted observational studies of caregivers in the emergency departments at 4 study sites using convenience sampling of patients. Caring behaviors were rated from 0 (did not occur) to 5 (high intensity). The observation included additional information, for example, caregiver roles, timing, and type of visit. Observed and unobserved patients completed exit surveys that recorded patient responses to the likelihood-to-recommend (loyalty) questions, patient perceptions of care, and demographic information. Common themes across all study sites emerged, including (1) the area that patients considered most important to an ED experience (prompt attention to their needs upon arrival to the emergency department); (2) the area that patients rated as least positive in their actual ED experience (prompt attention to their needs upon arrival to the emergency department); (3) caring behaviors that significantly affected patient loyalty (eg, making sure that the patient is aware of care-related details, working with a caring touch, and making the treatment procedure clearly understood by the patient); and (4) the impact of wait time to see a caregiver on patient loyalty. A number of correlations between caring behaviors and patient loyalty were statistically significant (P < .05) at all sites. The study results raised considerations for ED caregivers, particularly with regard to those caring behaviors that are most closely linked to patient loyalty but that occurred least frequently. The study showed through factor analysis that some caring behaviors tended to occur together, suggesting an underlying, unifying dimension to that factor. Copyright © 2010 Emergency Nurses Association. Published by Mosby, Inc. All rights reserved.

Informatics for patient safety: a nursing research perspective.

PubMed

Bakken, Suzanne

2006-01-01

In Crossing the Quality Chasm, the Institute of Medicine (IOM) Committee on Quality of Health Care in America identified the critical role of information technology in designing a health system that produces care that is "safe, effective, patient-centered, timely, efficient, and equitable" (Committee on Quality of Health Care in America, 2001, p. 164). A subsequent IOM report contends that improved information systems are essential to a new health care delivery system that "both prevents errors and learns from them when they occur" (Committee on Data Standards for Patient Safety, 2004, p. 1). This review specifically highlights the role of informatics processes and information technology in promoting patient safety and summarizes relevant nursing research. First, the components of an informatics infrastructure for patient safety are described within the context of the national framework for delivering consumer-centric and information-rich health care and using the National Health Information Infrastructure (NHII) (Thompson & Brailer, 2004). Second, relevant nursing research is summarized; this includes research studies that contributed to the development of selected infrastructure components as well as studies specifically focused on patient safety. Third, knowledge gaps and opportunities for nursing research are identified for each main topic. The health information technologies deployed as part of the national framework must support nursing practice in a manner that enables prevention of medical errors and promotion of patient safety and contributes to the development of practice-based nursing knowledge as well as best practices for patient safety. The seminal work that has been completed to date is necessary, but not sufficient, to achieve this objective.

An Overview of the CERC ARTEMIS Project

PubMed Central

Jagannathan, V.; Reddy, Y. V.; Srinivas, K.; Karinthi, R.; Shank, R.; Reddy, S.; Almasi, G.; Davis, T.; Raman, R.; Qiu, S.; Friedman, S.; Merkin, B.; Kilkenny, M.

1995-01-01

The basic premise of this effort is that health care can be made more effective and affordable by applying modern computer technology to improve collaboration among diverse and distributed health care providers. Information sharing, communication, and coordination are basic elements of any collaborative endeavor. In the health care domain, collaboration is characterized by cooperative activities by health care providers to deliver total and real-time care for their patients. Communication between providers and managed access to distributed patient records should enable health care providers to make informed decisions about their patients in a timely manner. With an effective medical information infrastructure in place, a patient will be able to visit any health care provider with access to the network, and the provider will be able to use relevant information from even the last episode of care in the patient record. Such a patient-centered perspective is in keeping with the real mission of health care providers. Today, an easy-to-use, integrated health care network is not in place in any community, even though current technology makes such a network possible. Large health care systems have deployed partial and disparate systems that address different elements of collaboration. But these islands of automation have not been integrated to facilitate cooperation among health care providers in large communities or nationally. CERC and its team members at Valley Health Systems, Inc., St. Marys Hospital and Cabell Huntington Hospital form a consortium committed to improving collaboration among the diverse and distributed providers in the health care arena. As the first contract recipient of the multi-agency High Performance Computing and Communications (HPCC) Initiative, this team of computer system developers, practicing rural physicians, community care groups, health care researchers, and tertiary care providers are using research prototypes and commercial off-the-shelf technologies to develop an open collaboration environment for the health care domain. This environment is called ARTEMIS — Advanced Research TEstbed for Medical InformaticS. PMID:8563249

Decision-making in nursing practice: An integrative literature review.

PubMed

Nibbelink, Christine W; Brewer, Barbara B

2018-03-01

To identify and summarise factors and processes related to registered nurses' patient care decision-making in medical-surgical environments. A secondary goal of this literature review was to determine whether medical-surgical decision-making literature included factors that appeared to be similar to concepts and factors in naturalistic decision making (NDM). Decision-making in acute care nursing requires an evaluation of many complex factors. While decision-making research in acute care nursing is prevalent, errors in decision-making continue to lead to poor patient outcomes. Naturalistic decision making may provide a framework for further exploring decision-making in acute care nursing practice. A better understanding of the literature is needed to guide future research to more effectively support acute care nurse decision-making. PubMed and CINAHL databases were searched, and research meeting criteria was included. Data were identified from all included articles, and themes were developed based on these data. Key findings in this review include nursing experience and associated factors; organisation and unit culture influences on decision-making; education; understanding patient status; situation awareness; and autonomy. Acute care nurses employ a variety of decision-making factors and processes and informally identify experienced nurses to be important resources for decision-making. Incorporation of evidence into acute care nursing practice continues to be a struggle for acute care nurses. This review indicates that naturalistic decision making may be applicable to decision-making nursing research. Experienced nurses bring a broad range of previous patient encounters to their practice influencing their intuitive, unconscious processes which facilitates decision-making. Using naturalistic decision making as a conceptual framework to guide research may help with understanding how to better support less experienced nurses' decision-making for enhanced patient outcomes. © 2017 John Wiley & Sons Ltd.

A physician faces her own ovarian cancer | Center for Cancer Research

Cancer.gov

Drs. Tracie Miller and Steve Lipshultz have spent their careers caring for pediatric patients and conducting research at well-known medical institutions across the country. In some ways, those years of providing patient care and conducting medical research prepared the couple for Tracie’s ovarian cancer diagnosis, and in other ways, it didn’t.

The second Symptom Management Research Trial in Oncology (SMaRT Oncology-2): a randomised trial to determine the effectiveness and cost-effectiveness of adding a complex intervention for major depressive disorder to usual care for cancer patients.

PubMed

Walker, Jane; Cassidy, Jim; Sharpe, Michael

2009-03-30

Depression Care for People with Cancer is a complex intervention delivered by specially trained cancer nurses, under the supervision of a psychiatrist. It is given as a supplement to the usual care for depression, which patients receive from their general practitioner and cancer service. In a 'proof of concept' trial (Symptom Management Research Trials in Oncology-1) Depression Care for People with Cancer improved depression more than usual care alone. The second Symptom Management Research Trial in Oncology (SMaRT Oncology-2 Trial) will test its effectiveness and cost-effectiveness in a 'real world' setting. A two arm parallel group multi-centre randomised controlled trial. TRIAL PROCEDURES: 500 patients will be recruited through established systematic Symptom Monitoring Services, which screen patients for depression. Patients will have: a diagnosis of cancer (of various types); an estimated life expectancy of twelve months or more and a diagnosis of Major Depressive Disorder. Patients will be randomised to usual care or usual care plus Depression Care for People with Cancer. Randomisation will be carried out by telephoning a secure computerised central randomisation system or by using a secure web interface. The primary outcome measure is 'treatment response' measured at 24 week outcome data collection. 'Treatment response' will be defined as a reduction of 50% or more in the patient's baseline depression score, measured using the 20-item Symptom Checklist (SCL-20D). Secondary outcomes include remission of major depressive disorder, depression severity and patients' self-rated improvement of depression. Current controlled trials ISRCTN40568538 TRIAL HYPOTHESES: (1) Depression Care for People with Cancer as a supplement to usual care will be more effective than usual care alone in achieving a 50% reduction in baseline SCL-20D score at 24 weeks. (2) Depression Care for People with Cancer as a supplement to usual care will cost more than usual care alone but will be more cost effective in achieving improvements in patients' depression and quality of life.

An Integrative Model of Patient-Centeredness – A Systematic Review and Concept Analysis

PubMed Central

Scholl, Isabelle; Zill, Jördis M.; Härter, Martin; Dirmaier, Jörg

2014-01-01

Background Existing models of patient-centeredness reveal a lack of conceptual clarity. This results in a heterogeneous use of the term, unclear measurement dimensions, inconsistent results regarding the effectiveness of patient-centered interventions, and finally in difficulties in implementing patient-centered care. The aim of this systematic review was to identify the different dimensions of patient-centeredness described in the literature and to propose an integrative model of patient-centeredness based on these results. Methods Protocol driven search in five databases, combined with a comprehensive secondary search strategy. All articles that include a definition of patient-centeredness were eligible for inclusion in the review and subject to subsequent content analysis. Two researchers independently first screened titles and abstracts, then assessed full texts for eligibility. In each article the given definition of patient-centeredness was coded independently by two researchers. We discussed codes within the research team and condensed them into an integrative model of patient-centeredness. Results 4707 records were identified through primary and secondary search, of which 706 were retained after screening of titles and abstracts. 417 articles (59%) contained a definition of patient-centeredness and were coded. 15 dimensions of patient-centeredness were identified: essential characteristics of clinician, clinician-patient relationship, clinician-patient communication, patient as unique person, biopsychosocial perspective, patient information, patient involvement in care, involvement of family and friends, patient empowerment, physical support, emotional support, integration of medical and non-medical care, teamwork and teambuilding, access to care, coordination and continuity of care. In the resulting integrative model the dimensions were mapped onto different levels of care. Conclusions The proposed integrative model of patient-centeredness allows different stakeholders to speak the same language. It provides a foundation for creating better measures and interventions. It can also be used to inform the development of clinical guidance documents and health policy directives, and through this support the shift towards patient-centered health care. PMID:25229640

Ethics and Regulatory Challenges and Opportunities in Patient-Centered Comparative Effectiveness Research.

PubMed

Sugarman, Jeremy

2016-04-01

The Affordable Care Act includes provisions for the conduct of large-scale, patient-centered comparative effectiveness research. Such efforts aim toward the laudable moral goal of having evidence to improve health care decision making. Nevertheless, these pragmatic clinical research efforts that typically pose minimal incremental risk and are enmeshed in routine care settings perhaps surprisingly encounter an array of ethics and regulatory challenges and opportunities for academic health centers. An emphasis on patient-centeredness forces an examination of the appropriateness of traditional methods used to protect the rights, interests, and welfare of participants. At the same time, meaningful collaboration with patients throughout the research process also necessitates ensuring that novel approaches to research (including recruitment and consent) entail necessary protections regarding such issues as privacy. As the scientific and logistical aspects of this research are being developed, substantial attention is being focused on the accompanying ethics and regulatory issues that have emerged, which should help to facilitate ethically appropriate research in a variety of contexts.

Effect of patient navigation on satisfaction with cancer-related care

PubMed Central

Winters, Paul C.; Jean-Pierre, Pascal; Warren-Mears, Victoria; Post, Douglas; Van Duyn, Mary Ann S.; Fiscella, Kevin; Darnell, Julie; Freund, Karen M.

2015-01-01

Purpose Despite growing popularity of patient navigation (PN) as a means to improve cancer care quality and reduce cancer-related disparities, there are few well-designed controlled trials assessing the impact of PN on patient outcomes like satisfaction with care. The present controlled study examined effect of PN on satisfaction with cancer-related care. Methods Patients who presented with a symptom or abnormal screening test (n=1788) or definitive diagnosis (n=445) of breast, cervical, colorectal, or prostate cancer from eight Patient Navigator Research Program sites were included in one of two groups: intervention (PN) or comparison (usual care or usual care plus cancer educational materials). Trained patient navigators met with intervention group participants to help them assess and identify resources to address barriers to cancer diagnostic or treatment care. Using a validated instrument, we assessed participants' satisfaction with their cancer diagnostic or treatment care up to 3 months after diagnostic resolution of a cancer-related abnormality or within 3 months of initiation of cancer treatment. Results Overall, patients reported high satisfaction with diagnostic care and cancer treatment. There were no statistically significant differences between PN and control groups in satisfaction with cancer-related care (p>0.05). Hispanic and African American participants were less likely to report high satisfaction with cancer care when compared to White patients. Middle-aged participants with higher education, higher household income, private insurance, owning their own home, working full-time, and those whose primary language is English had higher satisfaction with cancer-related diagnostic care. Conclusions PN had no statistically significant effect on patients' satisfaction with cancer-related care. Further research is needed to define the patient populations who might benefit from PN, content of PN that is most useful, and services that might enhance PN. PMID:26438146

Client Centeredness and Health Reform: Key Issues for Occupational Therapy

PubMed Central

Pitonyak, Jennifer S.; Fogelberg, Donald; Leland, Natalie E.

2015-01-01

Health reform promotes the delivery of patient-centered care. Occupational therapy’s rich history of client-centered theory and practice provides an opportunity for the profession to participate in the evolving discussion about how best to provide care that is truly patient centered. However, the growing emphasis on patient-centered care also poses challenges to occupational therapy’s perspectives on client-centered care. We compare the conceptualizations of client-centered and patient-centered care and describe the current state of measurement of client-centered and patient-centered care. We then discuss implications for occupational therapy’s research agenda, practice, and education within the context of patient-centered care, and propose next steps for the profession. PMID:26356651

Cross-Cultural Validation of the Patient Perception of Integrated Care Survey.

PubMed

Tietschert, Maike V; Angeli, Federica; van Raak, Arno J A; Ruwaard, Dirk; Singer, Sara J

2017-07-20

To test the cross-cultural validity of the U.S. Patient Perception of Integrated Care (PPIC) Survey in a Dutch sample using a standardized procedure. Primary data collected from patients of five primary care centers in the south of the Netherlands, through survey research from 2014 to 2015. Cross-sectional data collected from patients who saw multiple health care providers during 6 months preceding data collection. The PPIC survey includes 59 questions that measure patient perceived care integration across providers, settings, and time. Data analysis followed a standardized procedure guiding data preparation, psychometric analysis, and included invariance testing with the U.S. dataset. Latent scale structures of the Dutch and U.S. survey were highly comparable. Factor "Integration with specialist" had lower reliability scores and noninvariance. For the remaining factors, internal consistency and invariance estimates were strong. The standardized cross-cultural validation procedure produced strong support for comparable psychometric characteristics of the Dutch and U.S. surveys. Future research should examine the usability of the proposed procedure for contexts with greater cultural differences. © Health Research and Educational Trust.

Assessing nurse-patient interactions from a caring perspective: report of the development and preliminary psychometric testing of the Caring Nurse--Patient Interactions Scale.

PubMed

Cossette, Sylvie; Cara, Chantal; Ricard, Nicole; Pepin, Jacinthe

2005-08-01

While there is a large body of literature regarding caring in nursing and some measurement tools addressing the concept have been developed, limitations of existing instruments constrain theory-driven research on nurse-patient interactions. The purpose of this paper is to describe the development and initial psychometric evaluation of the Caring Nurse-Patient Interactions Scale in a sample of 332 nurses and nursing students. The tool intended to facilitate research on the links between caring and patient outcomes. A content validity approach involving 13 expert nurses resulted in a 70-item tool sub-divided into 10 nursing carative factors. Alpha coefficients between sub-scales varied from .73 to .91 and sub-scales inter-correlations ranged from .53 to .89. Pearson correlation coefficients ranged from --.02 to .32 between the sub-scales and social desirability suggesting low to moderate bias. Results of the contrasted group approach partially supported the hypotheses while all differences were in the expected direction. Results suggest that the scale has strong potential for use in research, clinical and educational settings.

The organisation of critical care for burn patients in the UK: epidemiology and comparison of mortality prediction models.

PubMed

Toft-Petersen, A P; Ferrando-Vivas, P; Harrison, D A; Dunn, K; Rowan, K M

2018-05-15

In the UK, a network of specialist centres has been set up to provide critical care for burn patients. However, some burn patients are admitted to general intensive care units. Little is known about the casemix of these patients and how it compares with patients in specialist burn centres. It is not known whether burn-specific or generic risk prediction models perform better when applied to patients managed in intensive care units. We examined admissions for burns in the Case Mix Programme Database from April 2010 to March 2016. The casemix, activity and outcome in general and specialist burn intensive care units were compared and the fit of two burn-specific risk prediction models (revised Baux and Belgian Outcome in Burn Injury models) and one generic model (Intensive Care National Audit and Research Centre model) were compared. Patients in burn intensive care units had more extensive injuries compared with patients in general intensive care units (median (IQR [range]) burn surface area 16 (7-32 [0-98])% vs. 8 (1-18 [0-100])%, respectively) but in-hospital mortality was similar (22.8% vs. 19.0%, respectively). The discrimination and calibration of the generic Intensive Care National Audit and Research Centre model was superior to the revised Baux and Belgian Outcome in Burn Injury burn-specific models for patients managed on both specialist burn and general intensive care units. © 2018 The Association of Anaesthetists of Great Britain and Ireland.

Health information technology needs help from primary care researchers.

PubMed

Krist, Alex H; Green, Lee A; Phillips, Robert L; Beasley, John W; DeVoe, Jennifer E; Klinkman, Michael S; Hughes, John; Puro, Jon; Fox, Chester H; Burdick, Tim

2015-01-01

While health information technology (HIT) efforts are beginning to yield measurable clinical benefits, more is needed to meet the needs of patients and clinicians. Primary care researchers are uniquely positioned to inform the evidence-based design and use of technology. Research strategies to ensure success include engaging patient and clinician stakeholders, working with existing practice-based research networks, and using established methods from other fields such as human factors engineering and implementation science. Policies are needed to help support primary care researchers in evaluating and implementing HIT into everyday practice, including expanded research funding, strengthened partnerships with vendors, open access to information systems, and support for the Primary Care Extension Program. Through these efforts, the goal of improved outcomes through HIT can be achieved. © Copyright 2015 by the American Board of Family Medicine.

Palliative and end of life care in solid organ transplantation.

PubMed

Wentlandt, K; Weiss, A; O'Connor, E; Kaya, E

2017-12-01

Palliative care is an interprofessional approach that focuses on quality of life of patients who are facing life-threatening illness. Palliative care is consistently associated with improvements in advance care planning, patient and caregiver satisfaction, quality of life, symptom burden, and lower healthcare utilization. Most transplant patients have advanced chronic disease, significant symptom burden, and mortality awaiting transplant. Transplantation introduces new risks including perioperative death, organ rejection, infection, renal insufficiency, and malignancy. Numerous publications over the last decade identify that palliative care is well-suited to support these patients and their caregivers, yet access to palliative care and research within this population are lacking. This review describes palliative care and summarizes existing research supporting palliative intervention in advanced organ failure and transplant populations. A proposed model to provide palliative care in parallel with disease-directed therapy in a transplant program has the potential to improve symptom burden, quality of life, and healthcare utilization. Further studies are needed to elucidate specific benefits of palliative care for this population. In addition, there is a tremendous need for education, specifically for clinicians, patients, and families, to improve understanding of palliative care and its benefits for patients with advanced disease. © 2017 The American Society of Transplantation and the American Society of Transplant Surgeons.

A Study to Determine the Correlation between Continuity of Care and Patient Medication Compliance

DTIC Science & Technology

1984-08-01

U (III FILE ’Y TO DETERMINE THE CORRELATION BETWEEN CONTINUITY OF CARE AND PATIENT MEDICATION COMPLIANCE IA Graduate Research Project Submitted to...43 APPENDIX A. PATIENT MEDICATION COMPLIANCE QUESTIONNAIRE . . . . . 45 B. COMPUTER CODED INPUT FORMAT . . . . . . . ...... 48 C. RESEARCH DATA...and that adhered to by the patient . This failure to comply with medical recommendations results in a waste of health resources, frustration to the

Enhanced patient research participation: a Photovoice study in Blantyre Malawi.

PubMed

Bates, Maya Jane; Ardrey, Jane; Mphwatiwa, Treza; Squire, Stephen Bertel; Niessen, Louis Willem

2018-06-01

Patient involvement in palliative care research is a desirable if challenging goal. Photovoice is an action research method in which affected communities gather photographs to document and discuss their communities' strengths and concerns. Engagement with policymakers is a separately stated goal. Photovoice is increasingly used in health-related research but has not been widely described in the palliative care literature. We report on experiences and lessons learnt using Photovoice in Blantyre, Malawi to encourage its wider use in research and practice. Thirteen co-researchers (six patients and seven household carers, mean age 47 years) receiving community-based palliative care, attended nine half-day group sessions over a 4-month period. Co-researchers produced, selected and analysed photographs. On completion of data collection, they conducted an advocacy event, including a photographic exhibition, to which media representatives and community leaders were invited. Procedures to ensure safety of co-researchers and to obtain consent of individuals identified in the photographs were developed during the planning phase. Co-researchers engaged with the Photovoice process with enthusiasm, although frailty and physical disability (poor sight) limited participation for some older adults. Inclusion of palliative care staff within the research team helped to facilitate open dialogue and clinical review where appropriate. In this Photovoice study, patients and family members receiving palliative care engaged in an exploration of household well-being using photography, participatory analysis and an advocacy event. With appropriate planning, Photovoice can be adapted to a range of settings to enhance patient participation. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Building Imaging Institutes of Patient Care Outcomes: Imaging as a Nidus for Innovation in Clinical Care, Research, and Education.

PubMed

Petrou, Myria; Cronin, Paul; Altaee, Duaa K; Kelly, Aine M; Foerster, Bradley R

2018-05-01

Traditionally, radiologists have been responsible for the protocol of imaging studies, imaging acquisition, supervision of imaging technologists, and interpretation and reporting of imaging findings. In this article, we outline how radiology needs to change and adapt to a role of providing value-based, integrated health-care delivery. We believe that the way to best serve our specialty and our patients is to undertake a fundamental paradigm shift in how we practice. We describe the need for imaging institutes centered on disease entities (eg, lung cancer, multiple sclerosis) to not only optimize clinical care and patient outcomes, but also spur the development of a new educational focus, which will increase opportunities for medical trainees and other health professionals. These institutes will also serve as unique environments for testing and implementing new technologies and for generating new ideas for research and health-care delivery. We propose that the imaging institutes focus on how imaging practices-including new innovations-improve patient care outcomes within a specific disease framework. These institutes will allow our specialty to lead patient care, provide the necessary infrastructure for state-of-the art-education of trainees, and stimulate innovative and clinically relevant research. Copyright © 2018 The Association of University Radiologists. All rights reserved.

Video Elicitation Interviews: A Qualitative Research Method for Investigating Physician-Patient Interactions

PubMed Central

Henry, Stephen G.; Fetters, Michael D.

2012-01-01

We describe the concept and method of video elicitation interviews and provide practical guidance for primary care researchers who want to use this qualitative method to investigate physician-patient interactions. During video elicitation interviews, researchers interview patients or physicians about a recent clinical interaction using a video recording of that interaction as an elicitation tool. Video elicitation is useful because it allows researchers to integrate data about the content of physician-patient interactions gained from video recordings with data about participants’ associated thoughts, beliefs, and emotions gained from elicitation interviews. This method also facilitates investigation of specific events or moments during interactions. Video elicitation interviews are logistically demanding and time consuming, and they should be reserved for research questions that cannot be fully addressed using either standard interviews or video recordings in isolation. As many components of primary care fall into this category, high-quality video elicitation interviews can be an important method for understanding and improving physician-patient interactions in primary care. PMID:22412003

Video elicitation interviews: a qualitative research method for investigating physician-patient interactions.

PubMed

Henry, Stephen G; Fetters, Michael D

2012-01-01

We describe the concept and method of video elicitation interviews and provide practical guidance for primary care researchers who want to use this qualitative method to investigate physician-patient interactions. During video elicitation interviews, researchers interview patients or physicians about a recent clinical interaction using a video recording of that interaction as an elicitation tool. Video elicitation is useful because it allows researchers to integrate data about the content of physician-patient interactions gained from video recordings with data about participants' associated thoughts, beliefs, and emotions gained from elicitation interviews. This method also facilitates investigation of specific events or moments during interactions. Video elicitation interviews are logistically demanding and time consuming, and they should be reserved for research questions that cannot be fully addressed using either standard interviews or video recordings in isolation. As many components of primary care fall into this category, high-quality video elicitation interviews can be an important method for understanding and improving physician-patient interactions in primary care.

Physician opportunity costs for performing practice-based research.

PubMed

Hahn, D L

2000-11-01

An inverse association has been documented between the magnitude of patient care responsibilities (health maintenance organization penetration) and the amount of clinical research produced by academic medical centers. The output of academic family practice research is affected by this calculus. This article presents evidence that current market-place demands to increase patient care services may have an even greater impact on nonacademic family practice clinician researchers involved in practice-based research (PBR).

Is it acceptable to video-record palliative care consultations for research and training purposes? A qualitative interview study exploring the views of hospice patients, carers and clinical staff.

PubMed

Pino, Marco; Parry, Ruth; Feathers, Luke; Faull, Christina

2017-09-01

Research using video recordings can advance understanding of healthcare communication and improve care, but making and using video recordings carries risks. To explore views of hospice patients, carers and clinical staff about whether videoing patient-doctor consultations is acceptable for research and training purposes. We used semi-structured group and individual interviews to gather hospice patients, carers and clinical staff views. We used Braun and Clark's thematic analysis. Interviews were conducted at one English hospice to inform the development of a larger video-based study. We invited patients with capacity to consent and whom the care team judged were neither acutely unwell nor severely distressed (11), carers of current or past patients (5), palliative medicine doctors (7), senior nurses (4) and communication skills educators (5). Participants viewed video-based research on communication as valuable because of its potential to improve communication, care and staff training. Video-based research raised concerns including its potential to affect the nature and content of the consultation and threats to confidentiality; however, these were not seen as sufficient grounds for rejecting video-based research. Video-based research was seen as acceptable and useful providing that measures are taken to reduce possible risks across the recruitment, recording and dissemination phases of the research process. Video-based research is an acceptable and worthwhile way of investigating communication in palliative medicine. Situated judgements should be made about when it is appropriate to involve individual patients and carers in video-based research on the basis of their level of vulnerability and ability to freely consent.

Funding a Health Disparities Research Agenda: The Case of Medicare Home Health Care

ERIC Educational Resources Information Center

Davitt, Joan K.

2014-01-01

Medicare home health care provides critical skilled nursing and therapy services to patients in their homes, generally after a period in an inpatient facility or nursing home. Disparities in access to, or outcomes of, home health care can result in patient deterioration and increased cost to the Medicare program if patient care needs intensify.…

Implementation of a Care Pathway for Primary Palliative Care in 5 research clusters in Belgium: quasi-experimental study protocol and innovations in data collection (pro-SPINOZA).

PubMed

Leysen, Bert; Van den Eynden, Bart; Gielen, Birgit; Bastiaens, Hilde; Wens, Johan

2015-09-28

Starting with early identification of palliative care patients by general practitioners (GPs), the Care Pathway for Primary Palliative Care (CPPPC) is believed to help primary health care workers to deliver patient- and family-centered care in the last year of life. The care pathway has been pilot-tested, and will now be implemented in 5 Belgian regions: 2 Dutch-speaking regions, 2 French-speaking regions and the bilingual capital region of Brussels. The overall aim of the CPPPC is to provide better quality of primary palliative care, and in the end to reduce the hospital death rate. The aim of this article is to describe the quantitative design and innovative data collection strategy used in the evaluation of this complex intervention. A quasi-experimental stepped wedge cluster design is set up with the 5 regions being 5 non-randomized clusters. The primary outcome is reduced hospital death rate per GPs' patient population. Secondary outcomes are increased death at home and health care consumption patterns suggesting high quality palliative care. Per research cluster, GPs will be recruited via convenience sampling. These GPs -volunteering to be involved will recruit people with reduced life expectancy and their informal care givers. Health care consumption data in the last year of life, available for all deceased people having lived in the research clusters in the study period, will be used for comparison between patient populations of participating GPs and patient populations of non-participating GPs. Description of baseline characteristics of participating GPs and patients and monitoring of the level of involvement by GPs, patients and informal care givers will happen through regular, privacy-secured web-surveys. Web-survey data and health consumption data are linked in a secure way, respecting Belgian privacy laws. To evaluate this complex intervention, a quasi-experimental stepped wedge cluster design has been set up. Context characteristics and involvement level of participants are important parameters in evaluating complex interventions. It is possible to securely link survey data with health consumption data. By appealing to IT solutions we hope to be able to partly reduce respondent burden, a known problem in palliative care research. ClinicalTrials.gov Identifier: NCT02266069.

A Process-Centered Tool for Evaluating Patient Safety Performance and Guiding Strategic Improvement

DTIC Science & Technology

2005-01-01

next patient safety steps in individual health care organizations. The low priority given to Category 3 (Focus on patients , other customers , and...presents a patient safety applicator tool for implementing and assessing patient safety systems in health care institutions. The applicator tool consists...the survey rounds. The study addressed three research questions: 1. What critical processes should be included in health care patient safety systems

A scoping review of patient discharge from intensive care: opportunities and tools to improve care.

PubMed

Stelfox, Henry T; Lane, Dan; Boyd, Jamie M; Taylor, Simon; Perrier, Laure; Straus, Sharon; Zygun, David; Zuege, Danny J

2015-02-01

We conducted a scoping review to systematically review the literature reporting patient discharge from ICUs, identify facilitators and barriers to high-quality care, and describe tools developed to improve care. We searched Medline, Embase, CINAHL, and the Cochrane Central Register of Controlled Trials. Data were extracted on the article type, study details for research articles, patient population, phase of care during discharge, and dimensions of health-care quality. From 8,154 unique publications we included 224 articles. Of these, 131 articles (58%) were original research, predominantly case series (23%) and cohort (16%) studies; 12% were narrative reviews; and 11% were guidelines/policies. Common themes included patient and family needs/experiences (29% of articles) and the importance of complete and accurate information (26%). Facilitators of high-quality care included provider-patient communication (30%), provider-provider communication (25%), and the use of guidelines/policies (29%). Patient and family anxiety (21%) and limited availability of ICU and ward resources (26%) were reported barriers to high-quality care. A total of 47 tools to facilitate patient discharge from the ICU were identified and focused on patient evaluation for discharge (29%), discharge planning and teaching (47%), and optimized discharge summaries (23%). Common themes, facilitators and barriers related to patient and family needs/experiences, communication, and the use of guidelines/policies to standardize patient discharge from ICU transcend the literature. Candidate tools to improve care are available; comparative evaluation is needed prior to broad implementation and could be tested through local quality-improvement programs.

Infrastructure for Personalized Medicine at Partners HealthCare

PubMed Central

Weiss, Scott T.; Shin, Meini Sumbada

2016-01-01

Partners HealthCare Personalized Medicine (PPM) is a center within the Partners HealthCare system (founded by Massachusetts General Hospital and Brigham and Women’s Hospital) whose mission is to utilize genetics and genomics to improve the care of patients in a cost effective manner. PPM consists of five interconnected components: (1) Laboratory for Molecular Medicine (LMM), a CLIA laboratory performing genetic testing for patients world-wide; (2) Translational Genomics Core (TGC), a core laboratory providing genomic platforms for Partners investigators; (3) Partners Biobank, a biobank of samples (DNA, plasma and serum) for 50,000 Consented Partners patients; (4) Biobank Portal, an IT infrastructure and viewer to bring together genotypes, samples, phenotypes (validated diagnoses, radiology, and clinical chemistry) from the electronic medical record to Partners investigators. These components are united by (5) a common IT system that brings researchers, clinicians, and patients together for optimal research and patient care. PMID:26927187

Models of user involvement in the mental health context: intentions and implementation challenges.

PubMed

Storm, Marianne; Edwards, Adrian

2013-09-01

Patient-centered care, shared decision-making, patient participation and the recovery model are models of care which incorporate user involvement and patients' perspectives on their treatment and care. The aims of this paper are to examine these different care models and their association with user involvement in the mental health context and discuss some of the challenges associated with their implementation. The sources used are health policy documents and published literature and research on patient-centered care, shared decision-making, patient participation and recovery. The policy documents advocate that mental health services should be oriented towards patients' or users' needs, participation and involvement. These policies also emphasize recovery and integration of people with mental disorders in the community. However, these collaborative care models have generally been subject to limited empirical research about effectiveness. There are also challenges to implementation of the models in inpatient care. What evidence there is indicates tensions between patients' and providers' perspectives on treatment and care. There are issues related to risk and the person's capacity for user involvement, and concerns about what role patients themselves wish to play in decision-making. Lack of competence and awareness among providers are further issues. Further work on training, evaluation and implementation is needed to ensure that inpatient mental health services are adapting user oriented care models at all levels of services.

Examining the Role of Patient Experience Surveys in Measuring Health Care Quality

PubMed Central

Elliott, Marc N.; Zaslavsky, Alan M.; Hays, Ron D.; Lehrman, William G.; Rybowski, Lise; Edgman-Levitan, Susan; Cleary, Paul D.

2015-01-01

Patient care experience surveys evaluate the degree to which care is patient-centered. This article reviews the literature on the association between patient experiences and other measures of health care quality. Research indicates that better patient care experiences are associated with higher levels of adherence to recommended prevention and treatment processes, better clinical outcomes, better patient safety within hospitals, and less health care utilization. Patient experience measures that are collected using psychometrically sound instruments, employing recommended sample sizes and adjustment procedures, and implemented according to standard protocols are intrinsically meaningful and are appropriate complements for clinical process and outcome measures in public reporting and pay-for-performance programs. PMID:25027409

Basic nursing care: The most provided, the least evidence based - A discussion paper.

PubMed

Zwakhalen, Sandra M G; Hamers, Jan P H; Metzelthin, Silke F; Ettema, Roelof; Heinen, Maud; de Man-Van Ginkel, Janneke M; Vermeulen, Hester; Huisman-de Waal, Getty; Schuurmans, Marieke J

2018-06-01

To describe and discuss the "Basic Care Revisited" (BCR) research programme, a collaborative initiative that contributes to evidence-based basic nursing care and raises awareness about the importance of basic nursing care activities. While basic nursing care serves nearly all people at some point in their lifetime, it is poorly informed by evidence. There is a need to prioritise and evaluate basic nursing care activities to improve patient outcomes and improve the quality of care. Discussion paper METHOD: The discussion presented in this paper is based on nursing literature and theory and supported by the authors' clinical and research experiences. We present the developmental process and content of a research programme called "Basic Care Revisited" (BCR) as a solution to move forward and improve basic nursing care. To prioritise basic nursing care, we propose a research programme entitled "Basic Care Revisited" that aims to create awareness and expand knowledge on evidence-based basic nursing care by addressing four basic nursing care themes (bathing and dressing, communication, mobility, and nutrition) in different settings. The paper discusses a pathway to create a sustainable and productive research collaborative on basic nursing care and addresses issues to build research capacity. Revaluation of these important nursing activities will not only positively influence patient outcomes, but also have an impact on staff outcomes and organisational outcomes. © 2018 John Wiley & Sons Ltd.

Understanding Teamwork in the Provision of Cancer Care: Highlighting the Role of Trust.

PubMed

Lazzara, Elizabeth H; Keebler, Joseph R; Day, Soosi; DiazGranados, Deborah; Pan, Minggui; King, Michael A; Tu, Shin-Ping

2016-11-01

Team science research has indicated that trust is a critical variable of teamwork, contributing greatly to a team's performance. Trust has long been examined in health care with research focusing on the development of trust by patients with their health care practitioners. Studies have indicated that trust is linked to patient satisfaction, adherence to treatment, continuity of care, and improved outcomes. We explore the construct of trust using a case example of a patient who received a surgical procedure for a precancerous polyp. We apply the principle of trust to the case as well as present the literature on trust and key definitions for understanding trust. Additionally, we apply the definitions presented to the specific case example by highlighting moments where trust is developed or violated. Lastly, we offer insights to health care practitioners on the development of trust in their own patient interactions to improve care.

Understanding Teamwork in the Provision of Cancer Care: Highlighting the Role of Trust

PubMed Central

Keebler, Joseph R.; Day, Soosi; DiazGranados, Deborah; Pan, Minggui; King, Michael A.; Tu, Shin-Ping

2016-01-01

Team science research has indicated that trust is a critical variable of teamwork, contributing greatly to a team’s performance. Trust has long been examined in health care with research focusing on the development of trust by patients with their health care practitioners. Studies have indicated that trust is linked to patient satisfaction, adherence to treatment, continuity of care, and improved outcomes. We explore the construct of trust using a case example of a patient who received a surgical procedure for a precancerous polyp. We apply the principle of trust to the case as well as present the literature on trust and key definitions for understanding trust. Additionally, we apply the definitions presented to the specific case example by highlighting moments where trust is developed or violated. Lastly, we offer insights to health care practitioners on the development of trust in their own patient interactions to improve care. PMID:27601505

Outcomes of acutely ill older hospitalized patients following implementation of tailored models of care: a repeated measures (pre- and post-intervention) design.

PubMed

Chang, Esther; Hancock, Karen; Hickman, Louise; Glasson, Janet; Davidson, Patricia

2007-09-01

There is a lack of research investigating models of nursing care for older hospitalised patients that address the nursing needs of this group. The objective of this study is to evaluate the efficacy of models of care for acutely older patients tailored to two contexts: an aged care specific ward and a medical ward. This is a repeated measures design. Efficacy of the models was evaluated in terms of: patient and nurses' satisfaction with care provided; increased activities of daily living; reduced unplanned hospital readmissions; and medication knowledge. An aged care specific ward and a medical ward in two Sydney teaching hospitals. There were two groups of patients aged 65 years or older who were admitted to hospital for an acute illness: those admitted prior to model implementation (n=232) and those admitted during model implementation (n=116). Patients with moderate or severe dementia were excluded. The two groups of nurses were the pre-model group (n=90) who were working on the medical and aged care wards for the study prior to model implementation, and the post-model group (n=22), who were the nurses working on the wards during model implementation. Action research was used to develop the models of care in two wards: one for an aged care specific ward and another for a general medical ward where older patients were admitted. The models developed were based on empirical data gathered in an earlier phase of this study. The models were successful in both wards in terms of increasing satisfaction levels in patients and nurses (p<0.001), increasing functional independence as measured by activities of daily living (p<0.01), and increasing medication knowledge (p<0.001). Findings indicate that models of care developed by nurses using an evidence-based action research strategy can enhance both satisfaction and health outcomes in older patients.

Macroergonomics in Healthcare Quality and Patient Safety

PubMed Central

Carayon, Pascale; Karsh, Ben-Tzion; Gurses, Ayse P.; Holden, Richard; Hoonakker, Peter; Hundt, Ann Schoofs; Montague, Enid; Rodriguez, Joy; Wetterneck, Tosha B.

2014-01-01

The US Institute of Medicine and healthcare experts have called for new approaches to manage healthcare quality problems. In this chapter, we focus on macroergonomics, a branch of human factors and ergonomics that is based on the systems approach and considers the organizational and sociotechnical context of work activities and processes. Selected macroergonomic approaches to healthcare quality and patient safety are described such as the SEIPS model of work system and patient safety and the model of healthcare professional performance. Focused reviews on job stress and burnout, workload, interruptions, patient-centered care, health IT and medical devices, violations, and care coordination provide examples of macroergonomics contributions to healthcare quality and patient safety. Healthcare systems and processes clearly need to be systematically redesigned; examples of macroergonomic approaches, principles and methods for healthcare system redesign are described. Further research linking macroergonomics and care processes/patient outcomes is needed. Other needs for macroergonomics research are highlighted, including understanding the link between worker outcomes (e.g., safety and well-being) and patient outcomes (e.g., patient safety), and macroergonomics of patient-centered care and care coordination. PMID:24729777

A theoretical framework to guide a study of patients' bowel symptoms and self-care strategies following sphincter-saving surgery for rectal cancer.

PubMed

Landers, Margaret; McCarthy, Geraldine; Savage, Eileen

2013-08-01

A paucity of research is available on patients' bowel symptom experiences and self-care strategies following sphincter-saving surgery for rectal cancer. Most research undertaken to date on patients' bowel symptoms following surgery for rectal cancer has been largely atheoretical. The purpose of this paper is to describe the process of choosing a theoretical framework to guide a study of patients' bowel symptoms and self-care strategies following sphincter-saving surgery for rectal cancer. As a result of a thorough literature review, we determined that the Symptom Management Theory provided the most comprehensive framework to guide our research. Copyright © 2013 Elsevier Inc. All rights reserved.

Using holistic interpretive synthesis to create practice-relevant guidance for person-centred fundamental care delivered by nurses.

PubMed

Feo, Rebecca; Conroy, Tiffany; Marshall, Rhianon J; Rasmussen, Philippa; Wiechula, Richard; Kitson, Alison L

2017-04-01

Nursing policy and healthcare reform are focusing on two, interconnected areas: person-centred care and fundamental care. Each initiative emphasises a positive nurse-patient relationship. For these initiatives to work, nurses require guidance for how they can best develop and maintain relationships with their patients in practice. Although empirical evidence on the nurse-patient relationship is increasing, findings derived from this research are not readily or easily transferable to the complexities and diversities of nursing practice. This study describes a novel methodological approach, called holistic interpretive synthesis (HIS), for interpreting empirical research findings to create practice-relevant recommendations for nurses. Using HIS, umbrella review findings on the nurse-patient relationship are interpreted through the lens of the Fundamentals of Care Framework. The recommendations for the nurse-patient relationship created through this approach can be used by nurses to establish, maintain and evaluate therapeutic relationships with patients to deliver person-centred fundamental care. Future research should evaluate the validity and impact of these recommendations and test the feasibility of using HIS for other areas of nursing practice and further refine the approach. © 2016 John Wiley & Sons Ltd.

[Drug information centers-instruments for health care research?].

PubMed

Hach, Isabel; Meusel, Dirk; Maywald, Ulf; Kirch, Wilhelm

2005-07-15

Patient- and physician-centered drug information services (DICs) can contribute to a better communication between doctors and patients and health care research. Furthermore, gaps within health care can be identified. Data of two DICs (the physician-centered service is in operation for almost 10 years, the patient-centered service since 2001), both established in the Institute of Clinical Pharmacology of the TU Dresden, Germany, were analyzed using descriptive statistics. The consultation frequency in both DICs was high (2004: 129 enquiries by physicians; 1,358 by patients). Questions concerning highly prevalent drug groups, i. e., cardiovascular drugs (physicians: 20%; patients: 30%) and drugs targeting the central nervous system (physicians: 22%; patients: 17%) were asked most frequently. The results indicate that patient's drug information in primary care needs improvement. Although in both DICs similar drug groups were asked, the authors suggest that the time factor is the core obstacle to sufficient information rather than knowledge deficits of physicians.

Inclusion of non-English-speaking patients in research: A single institution experience.

PubMed

Bernier, Rachel; Halpin, Erin; Staffa, Steven J; Benson, Lindsey; DiNardo, James A; Nasr, Viviane G

2018-05-01

Considering the recent increase in medical care provided to patients from foreign countries and the diversity of languages spoken by families living within the United States, it is important to determine whether non-English-speaking patients have access to participate in clinical research from which they may benefit. We aimed to determine the number of non-English-speaking patients presenting to Boston Children's Hospital for medical care between 2011 and 2016, the number of clinical research protocols active within the Department of Anesthesiology, Critical Care and Pain Medicine approved to enroll non-English-speaking patients, as well as the number of both non-English- and English-speaking patients approached and enrolled in these studies. Furthermore, we attempted to determine barriers that may have prevented non-English-speaking patients from inclusion in clinical research. We conducted a retrospective review of various data sources during a 5-year period. Data included the number of non-English-speaking patients presenting to Boston Children's Hospital for care as well as the number of English- and non-English-speaking patients approached for studies at the Department of Anesthesiology each year. Additionally, we reviewed data from the IRB which included the justification that research teams provided when opting to exclude non-English-speaking participants. In addition, we attempted to determine the barriers that may have prevented these patients from inclusion in research protocols. We found that the number of non-English-speaking patients presenting to Boston Children's Hospital increased over time. However, the number of studies approved to enroll non-English-speaking patients within the Department of Anesthesiology and the rate of enrollment of these patients did not increase at the same rate. In order to increase the number of non-English-speaking patients approached to participate in research, we must improve cultural awareness and provide investigators with resources for interpreter and translation services. © 2018 John Wiley & Sons Ltd.

Priorities in pediatric epilepsy research: improving children's futures today.

PubMed

Berg, Anne T; Baca, Christine B; Loddenkemper, Tobias; Vickrey, Barbara G; Dlugos, Dennis

2013-09-24

The Priorities in Pediatric Epilepsy Research workshop was held in the spirit of patient-centered and patient-driven mandates for developing best practices in care, particularly for epilepsy beginning under age 3 years. The workshop brought together parents, representatives of voluntary advocacy organizations, physicians, allied health professionals, researchers, and administrators to identify priority areas for pediatric epilepsy care and research including implementation and testing of interventions designed to improve care processes and outcomes. Priorities highlighted were 1) patient outcomes, especially seizure control but also behavioral, academic, and social functioning; 2) early and accurate diagnosis and optimal treatment; 3) role and involvement of parents (communication and shared decision-making); and 4) integration of school and community organizations with epilepsy care delivery. Key factors influencing pediatric epilepsy care included the child's impairments and seizure presentation, parents, providers, the health care system, and community systems. Care was represented as a sequential process from initial onset of seizures to referral for comprehensive evaluation when needed. We considered an alternative model in which comprehensive care would be utilized from onset, proactively, rather than reactively after pharmacoresistance became obvious. Barriers, including limited levels of evidence about many aspects of diagnosis and management, access to care--particularly epilepsy specialty and behavioral health care--and implementation, were identified. Progress hinges on coordinated research efforts that systematically address gaps in knowledge and overcoming barriers to access and implementation. The stakes are considerable, and the potential benefits for reduced burden of refractory epilepsy and lifelong disabilities may be enormous.

Does comparative effectiveness research promote rationing of cancer care?

PubMed

Peppercorn, Jeffrey; Zafar, S Yousuf; Houck, Kevin; Ubel, Peter; Meropol, Neal J

2014-03-01

Comparative effectiveness research aims to inform health-care decisions by patients, clinicians, and policy makers. However, questions related to what information is relevant, and how to view the relative attributes of alternative interventions have political, social, and medical considerations. In particular, questions about whether cost is a relevant factor, and whether cost-effectiveness is a desirable or necessary component of such research, have become increasingly controversial as the area has gained prominence. Debate has emerged about whether comparative effectiveness research promotes rationing of cancer care. At the heart of this debate are questions related to the role and limits of patient autonomy, physician discretion in health-care decision making, and the nature of scientific knowledge as an objective good. In this article, we examine the role of comparative effectiveness research in the USA, UK, Canada, and other health-care systems, and the relation between research and policy. As we show, all health systems struggle to balance access to cancer care and control of costs; comparative effectiveness data can clarify choices, but does not itself determine policy or promote rationing of care. Copyright © 2014 Elsevier Ltd. All rights reserved.

System impact research – increasing public health and health care system performance

PubMed Central

Malmivaara, Antti

2016-01-01

Abstract Background Interventions directed to system features of public health and health care should increase health and welfare of patients and population. Aims To build a new framework for studies aiming to assess the impact of public health or health care system, and to consider the role of Randomized Controlled Trials (RCTs) and of Benchmarking Controlled Trials (BCTs). Methods The new concept is partly based on the author's previous paper on the Benchmarking Controlled Trial. The validity and generalizability considerations were based on previous methodological studies on RCTs and BCTs. Results The new concept System Impact Research (SIR) covers all the studies which aim to assess the impact of the public health system or of the health care system on patients or on population. There are two kinds of studies in System Impact Research: Benchmarking Controlled Trials (observational) and Randomized Controlled Trials (experimental). The term impact covers in particular accessibility, quality, effectiveness, safety, efficiency, and equality. Conclusions System Impact Research – creating the scientific basis for policy decision making - should be given a high priority in medical, public health and health economic research, and should also be used for improving performance. Leaders at all levels of health and social care can use the evidence from System Impact Research for the benefit of patients and population.Key messagesThe new concept of SIR is defined as a research field aiming at assessing the impacts on patients and on populations of features of public health and health and social care systems or of interventions trying to change these features.SIR covers all features of public health and health and social care system, and actions upon these features. The term impact refers to all effects caused by the public health and health and social care system or parts of it, with particular emphasis on accessibility, quality, effectiveness, adverse effects, efficiency, and equality of services.SIR creates the scientific basis for policy decisions. Leaders at all levels of health and social care can use the evidence from SIR for the benefit of the patients and the population. PMID:26977939

System impact research - increasing public health and health care system performance.

PubMed

Malmivaara, Antti

2016-01-01

Interventions directed to system features of public health and health care should increase health and welfare of patients and population. To build a new framework for studies aiming to assess the impact of public health or health care system, and to consider the role of Randomized Controlled Trials (RCTs) and of Benchmarking Controlled Trials (BCTs). The new concept is partly based on the author's previous paper on the Benchmarking Controlled Trial. The validity and generalizability considerations were based on previous methodological studies on RCTs and BCTs. The new concept System Impact Research (SIR) covers all the studies which aim to assess the impact of the public health system or of the health care system on patients or on population. There are two kinds of studies in System Impact Research: Benchmarking Controlled Trials (observational) and Randomized Controlled Trials (experimental). The term impact covers in particular accessibility, quality, effectiveness, safety, efficiency, and equality. System Impact Research - creating the scientific basis for policy decision making - should be given a high priority in medical, public health and health economic research, and should also be used for improving performance. Leaders at all levels of health and social care can use the evidence from System Impact Research for the benefit of patients and population. Key messages The new concept of SIR is defined as a research field aiming at assessing the impacts on patients and on populations of features of public health and health and social care systems or of interventions trying to change these features. SIR covers all features of public health and health and social care system, and actions upon these features. The term impact refers to all effects caused by the public health and health and social care system or parts of it, with particular emphasis on accessibility, quality, effectiveness, adverse effects, efficiency, and equality of services. SIR creates the scientific basis for policy decisions. Leaders at all levels of health and social care can use the evidence from SIR for the benefit of the patients and the population.

Pharmacy and primary care perspectives on e-prescribing in a rural community: A focused ethnography.

PubMed

Kooienga, Sarah; Singh, Reshmi L

Electronic prescribing (ERx) is the ability for prescriber to send a digital prescription directly to a pharmacist through a dedicated secure network. A number of federally funded incentives such as the health information technology for economic and clinical health (HITECH) and Meaningful Use standards have led to ERx implementation. ERx is an integral part of primary care practice and today most community pharmacies are enabled to accept e-prescriptions. Little is known about the experience of rural pharmacists, primary care providers and patients regarding e-prescribing. This paper reports on the results of ERx from their perspectives. The findings are a portion of a larger qualitative descriptive study focused on the meaning of Meaningful Use in remote rural communities. One remote rural community in the Pacific Northwest was used for this research endeavor. Explore understandings of e-prescribing from both pharmacist and primary care provider perspective. Explore patients' understandings and experiences of e-prescribing. The conceptual model for this research was the Ecological Transactional Model. This model informed the research design, interview questions and analysis. A qualitative descriptive methodology - focused ethnography was used for this study. Six key informant interviews, 14 patient interviews and 15 hours of participant observation provided the data. Data analysis occurred collectively between a social pharmacy researcher, a primary care nurse practitioner-researcher and pharmacy graduate students. The research qualitatively identified contextual understandings and dimensions of ERx in this setting. Based on a focused ethnographic methodology, contextual understandings of rurality and role identity, both pharmacist and primary care provider, were explored. Perspectives on ERx of patients, clinic manager and RN staff were also elicited. Three dimensions of ERx were identified - technological, structural and communication. The structural, technological and communication dimensions are essential in understanding e-prescribing across settings and addressing digital divides in our health care system. Implications for interprofessional pharmacy education were addressed. Understanding the rural context and the need for role adaptability has implications for health care policy. Additional research is needed on the role of the rural pharmacist and how best to interact with primary care providers and patients. Copyright © 2016 Elsevier Inc. All rights reserved.

The employee’s productivity in the health care sector in Poland and their impact on the treatment process of patients undergoing elective laparoscopic cholecystectomy

PubMed Central

Rosiek, Anna; Rosiek-Kryszewska, Aleksandra; Leksowski, Łukasz; Kornatowski, Tomasz; Leksowski, Krzysztof

2016-01-01

Background Increasing the engagement of employees in the treatment process of patients may benefit a hospital and employee productivity and may result in better patient care and satisfaction with medical services. Given this, the first step in improving the quality of patient care is better availability of doctors for patients in a hospital ward. Methods The research for this paper was conducted in six health care units in the Kuyavian-Pomeranian province in Poland. The research assessed how the elements relating to employees’ behavior and things characteristic to medical service influence patients’ willingness to recommend a hospital. Results Patients’ perception of services is linked with the behavior of medical employees and their engagement in the treatment process. Conclusion Our research indicates that individual employee recognition and collective recognition of hospital employees as a whole were identified as the most important factors in employee engagement in the treatment process (employee productivity) and patients’ satisfaction with medical service. PMID:27980396

Who will pay for medical education in our teaching hospitals?

PubMed

Relman, A S

1984-10-05

Although most medical educators believe that education, research, and patient care are inseparable and essential to their academic mission, the educational component of this triad has never been given adequate, earmarked support. To fund educational programs, medical centers first relied on research grants and later on third-party payments intended for patient care. However, research money has long since ceased to be available for other purposes and recent federal cost containment measures have started to reduce payments for patient care. Teaching hospitals are threatened with loss of support not only for education, but for their capital improvements and care of the poor. Many institutions are now hoping to generate new income through business deals with for-profit health care corporations, but this effort probably will also fail and may compromise professional traditions. Teaching hospitals serve the public interest and will have to depend, at least in part, on public subsidy of their unavoidable extra costs.

Dynamic consent: a possible solution to improve patient confidence and trust in how electronic patient records are used in medical research.

PubMed

Williams, Hawys; Spencer, Karen; Sanders, Caroline; Lund, David; Whitley, Edgar A; Kaye, Jane; Dixon, William G

2015-01-13

With one million people treated every 36 hours, routinely collected UK National Health Service (NHS) health data has huge potential for medical research. Advances in data acquisition from electronic patient records (EPRs) means such data are increasingly digital and can be anonymised for research purposes. NHS England's care.data initiative recently sought to increase the amount and availability of such data. However, controversy and uncertainty following the care.data public awareness campaign led to a delay in rollout, indicating that the success of EPR data for medical research may be threatened by a loss of patient and public trust. The sharing of sensitive health care data can only be done through maintaining such trust in a constantly evolving ethicolegal and political landscape. We propose that a dynamic consent model, whereby patients can electronically control consent through time and receive information about the uses of their data, provides a transparent, flexible, and user-friendly means to maintain public trust. This could leverage the huge potential of the EPR for medical research and, ultimately, patient and societal benefit.

Feasibility of conducting prospective observational research on critically ill, dying patients in the intensive care unit.

PubMed

van Beinum, Amanda; Hornby, Laura; Dhanani, Sonny; Ward, Roxanne; Chambers-Evans, Jane; Menon, Kusum

2017-01-01

Studying patients during the end of life is important, as it has the potential to lead to improvements in care for the dying. For patients who die after a controlled withdrawal of life-sustaining therapies in the intensive care unit, information about the natural history of death and the process of removing life support has additionally led to advances in practice for deceased organ donation. However, this unique population of severely critically ill and imminently dying patients has been difficult to study, largely due to assumptions made by research teams and ethics boards alike about the logistical difficulties of obtaining consent and completing research procedures before or during the process of withdrawal of life-sustaining therapies. In this paper, we describe the ethics substudy of the first prospective observational research study in Canada to obtain consent and collect clinical data on patients during the process of withdrawal of life-sustaining therapies in the intensive care unit. We describe in detail the process of protocol development, review by five institutional research ethics boards and bedside staff satisfaction with the study. We conclude that prospective research on a critically ill and imminently dying population is feasible and can be conducted in an ethical manner. Further information is needed about the experiences and motivations of families and substitute decision makers who provide consent for research on critically ill intensive care unit patients at the end of life. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Informed consent for and regulation of critical care research.

PubMed

Lemaire, François

2008-12-01

Critical care is a special area in which research needs to take place, because of the severity of the diseases which are treated there, but it is also a place where research faces a lot of hurdles and difficulties. The main cause of difficulties is the consent issue, as most patients cannot consent for themselves. Recently, all national legislations in the countries of the European Union have been modified to include the provisions of directive 2001/20. This review article provides a summary of the recent literature concerning the issue of consent for clinical care research such as how the surrogate consent reflects the view of the patient and how time consuming and inaccurate can be the consultation of a community before the start of a trial with a waiver of consent. Another hurdle to research is the rigidity of our legislations concerning clinical research, especially the absence of a simplified way for low or no-risk research. This article shows how this situation is potentially deleterious and how it could ultimately forbid low-risk research. Critical research remains a domain in which research on patients is difficult and controversial. Regulation can be difficult to implement, largely inadequate or uselessly complicated. Intensive care physicians need to keep pressure on politicians and lawmakers to constantly explain the necessity and specificities of critical care research.

Is home health technology adequate for proactive self-care?

PubMed

Horwitz, C M; Mueller, M; Wiley, D; Tentler, A; Bocko, M; Chen, L; Leibovici, A; Quinn, J; Shar, A; Pentland, A P

2008-01-01

To understand whether home health technology in the market and in development can satisfy the needs of patients and their non-professional caregivers for proactive support in managing health and chronic conditions in the home. A panel of clinical providers and technology researchers was assembled to examine whether home health technology addresses consumer-defined requirements for self-care devices. A lexicon of home care and self-care technology terms was then created. A global survey of home health technology for patients with heart disease and dementia was conducted. The 254 items identified were categorized by conditions treated, primary user, function, and purpose. A focus group of patients and caregivers was convened to describe their expectations of self-care technology. Items identified in the database were then assessed for these attributes. Patients and family caregivers indicated a need for intelligent self-care technology which supports early diagnosis of health changes, intervention enablement, and improvement of communication quality among patients and the health care system. Of these, only intervention enablement was commonly found in the home health technology items identified. An opportunity exists to meet consumer self-care needs through increased research and development in intelligent self-care technology.

Experiences of Patient-Centredness With Specialized Community-Based Care

PubMed Central

Winsor, S; Smith, A; Vanstone, M; Giacomini, M; Brundisini, FK; DeJean, D

2013-01-01

Background Specialized community-based care (SCBC) endeavours to help patients manage chronic diseases by formalizing the link between primary care providers and other community providers with specialized training. Many types of health care providers and community-based programs are employed in SCBC. Patient-centred care focuses on patients’ psychosocial experience of health and illness to ensure that patients’ care plans are modelled on their individual values, preferences, spirituality, and expressed needs. Objectives To synthesize qualitative research on patient and provider experiences of SCBC interventions and health care delivery models, using the core principles of patient-centredness. Data Sources This report synthesizes 29 primary qualitative studies on the topic of SCBC interventions for patients with chronic conditions. Included studies were published between 2002 and 2012, and followed adult patients in North America, Europe, Australia, and New Zealand. Review Methods Qualitative meta-synthesis was used to integrate findings across primary research studies. Results Three core themes emerged from the analysis: patients’ health beliefs affect their participation in SCBC interventions; patients’ experiences with community-based care differ from their experiences with hospital-based care; patients and providers value the role of nurses differently in community-based chronic disease care. Limitations Qualitative research findings are not intended to generalize directly to populations, although meta-synthesis across several qualitative studies builds an increasingly robust understanding that is more likely to be transferable. The diversity of interventions that fall under SCBC and the cross-interventional focus of many of the studies mean that findings might not be generalizable to all forms of SCBC or its specific components. Conclusions Patients with chronic diseases who participated in SCBC interventions reported greater satisfaction when SCBC helped them better understand their diagnosis, facilitated increased socialization, provided them with a role in managing their own care, and assisted them in overcoming psychological and social barriers. Plain Language Summary More and more, to reduce bed shortages in hospitals, health care systems are providing programs called specialized community-based care (SCBC) to patients with chronic diseases. These SCBC programs allow patients with chronic diseases to be managed in the community by linking their family physicians with other community-based health care providers who have specialized training. This report looks at the experiences of patients and health care providers who take part in SCBC programs, focusing on psychological and social factors. This kind of lens is called patient-centred. Three themes came up in our analysis: patients’ health beliefs affect how they take part in SCBC interventions; patients’ experiences with care in the community differ from their experiences with care in the hospital; patients and providers value the role of nurses differently. The results of this analysis could help those who provide SCBC programs to better meet patients’ needs. PMID:24228080

Working in silos? - Head & Neck cancer patients during and after treatment with or without early palliative care referral.

PubMed

Ullgren, Helena; Kirkpatrick, Lily; Kilpeläinen, Sini; Sharp, Lena

2017-02-01

The primary aim was to describe patients with Head and Neck (H&N) cancer referred to palliative care and how the care transition from acute oncological to palliative care impacted on both Health related quality of life (HRQoL) and information. The secondary aim was to explore H&N cancer patients' HRQoL and perceived information. H&N cancer patients were identified via the Swedish Cancer Register. Data were collected using the following questionnaires; European Organization for Research and Treatment of Cancer (EORTC) QLQ C-30, INFO25, and a study-specific questionnaire. Out of 289 patients, 203 (70%) responded and among these, 43 (21%) reported being referred to palliative care. Global health was the lowest reported functional scale (median score = 67) and fatigue (median scores 33) the highest reported symptom (QLQ C-30). Patients with a written care plan were significantly more satisfied with information regarding self-care compared to patients without a care plan. Patients referred to palliative care were less satisfied with information regarding disease (p < 0.000), the spread of the disease (p < 0.001) and were more likely to visit hospital emergency departments (43% vs. 19% p < 0.000). To avoid H&N cancer care in silos, a closer integration between the oncology and the palliative care team is needed. Further research on the complex situation of having oncological treatment concurrent with palliative care, is needed. Copyright © 2016 The Authors. Published by Elsevier Ltd.. All rights reserved.

Caring for burn patients at the United States Institute of Surgical Research: the nurses' multifaceted roles.

PubMed

Serio-Melvin, Maria; Yoder, Linda H; Gaylord, Kathryn M

2010-06-01

Nursing plays a critical role in the comprehensive burn care delivered at the US Army Institute of Surgical Research, otherwise known as the US Army's Burn Center serving the Department of Defense. This center serves as a model for burn units nationally and internationally. It also provides a challenging and innovative work environment for military and civilian nurses. Nurses in the Burn Center contribute to innovations in acute, rehabilitative, and psychological care for patients with burns. This article provides an overview of the complex nursing care provided to burn patients treated at the Burn Center. Copyright (c) 2010 Elsevier Inc. All rights reserved.

Co-creating possibilities for patients in palliative care to reach vital goals--a multiple case study of home-care nursing encounters.

PubMed

Bergdahl, Elisabeth; Benzein, Eva; Ternestedt, Britt-Marie; Elmberger, Eva; Andershed, Birgitta

2013-12-01

The patient's home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home-care nursing encounters (HCNEs) between the nurse, patient and patient's relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to explore planned HCNEs in palliative care. The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co-creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co-creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co-creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person-centered approach. © 2013 John Wiley & Sons Ltd.

Integrating complementary medicine and health care services into practice.

PubMed Central

LaValley, J W; Verhoef, M J

1995-01-01

Complementary medicine and health care services constitute a significant proportion of the use of health care services in Canada, despite a history of limited acceptance of these therapies by the medical profession. However, physician attitudes appear to be changing. A survey of a random sample of general practitioners in Quebec (see page 29 of this issue) shows that four out of five general practitioners perceive at least one of three complementary health care services to be useful. Similar surveys of samples in Alberta and Ontario suggest that physicians there, although somewhat less enthusiastic than their counterparts in Quebec, have also begun to be more open-minded about these types of therapies. However, physicians have reported little understanding of complementary health care services, which suggests the need for more research on and education about these services. The Medical Society of Nova Scotia has responded to this need by establishing a Section of Complementary Medicine. The authors believe that fair, accountable, scientific and rigorous research on complementary therapies will benefit physicians and patients. The problems inherent in applying reductionist analysis to a holistic approach to care can be largely circumvented by focusing on outcomes research. In light of the popularity of these therapies, inquiry into patient use of complementary health care services should become a part of a complete patient history. This measure would promote greater patient-physician communication and integration of complementary health care services into patient care. PMID:7796375

Balancing the role of the dental school in teaching, research and patient care; including care for underserved areas.

PubMed

Holbrook, W P; Brodin, P; Balciuniene, I; Brukiene, V; Bucur, M V; Corbet, E; Dillenberg, J; Djukanovic, D; Ekanayake, K; Eriksen, H; Fisher, J; Goffin, G; Hull, P; Kumchai, T; Lumley, P; Lund, J; Mathur, V; Novaes, A; Puriene, A; Roger-Leroi, V; Saito, I; Turner, S; Mabelya, L

2008-02-01

Inequalities within dentistry are common and are reflected in wide differences in the levels of oral health and the standard of care available both within and between countries and communities. Furthermore there are patients, particularly those with special treatment needs, who do not have the same access to dental services as the general public. The dental school should aim to recruit students from varied backgrounds into all areas covered by the oral healthcare team and to train students to treat the full spectrum of patients including those with special needs. It is essential, however, that the dental student achieves a high standard of clinical competence and this cannot be gained by treating only those patients with low expectations for care. Balancing these aspects of clinical education is difficult. Research is an important stimulus to better teaching and better clinical care. It is recognized that dental school staff should be active in research, teaching, clinical work and frequently administration. Maintaining a balance between the commitments to clinical care, teaching and research while also taking account of underserved areas in each of these categories is a difficult challenge but one that has to be met to a high degree in a successful, modern dental school.

'Just doing the best we can': health care providers' perceptions of barriers to providing care to Marshallese patients in Arkansas.

PubMed

McElfish, Pearl A; Chughtai, Almas; Low, Lisa K; Garner, Robert; Purvis, Rachel S

2018-05-04

Marshallese migrating to the United States encounter challenges in accessing health care. Previous literature has investigated Marshallese participants' perceptions of the barriers they face in accessing health care. For this study, health care providers managing the care of Marshallese patients were interviewed to understand the providers' perception of barriers that their Marshallese patients encounter. A qualitative research design was utilized to explore health care providers' perceptions of and experiences with the barriers faced by their Marshallese patients when accessing the US health care system. The primary barriers identified were: (1) economic barriers; (2) communication challenges; (3) difficulty understanding and navigating the western health care system; and (4) structural and system barriers. This study provides insight on the barriers Marshallese patients face in accessing health care as well as the barriers providers face in delivering care to Marshallese patients. A better understanding of these barriers can help health care providers and educators to begin initiating improvements in the delivery of care to Marshallese patients.

Patient and Family Engagement in Designing and Implementing a Weaning Trial: A Novel Research Paradigm in Critical Care.

PubMed

Burns, Karen E A; Devlin, John W; Hill, Nicholas S

2017-10-01

The call for meaningful patient and family engagement in research has recently gained considerable momentum. This article defines patient and family engagement broadly and specifically in clinical research. Using a multicenter, North American weaning trial as an exemplar, we describe our early experiences as clinical researchers with patient and family engagement. The role of our Patient and Family Advisory Committee in trial design and implementation is illustrated. Through our experiences, we share our insights regarding the perceived opportunities and also highlight some challenges associated with engaging patients and family engagement in critical care research. Although "engagement science" is in its infancy, engaging patients and families in research holds promise as a novel research paradigm that will not only provide new insights into the questions, methods, and outcomes used in ICU research, but it will also make investments in research more accountable and ensure a strong "patient- and family-centered focus" of our research. Copyright © 2017 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.

Reclaiming the everyday world: how long-term ventilated patients in critical care seek to gain aspects of power and control over their environment.

PubMed

Johnson, Patricia

2004-08-01

Critical care nurses are increasingly seeking to base patient care on evidence derived from research studies. The purpose of this study was to explore the meanings former patients attributed to being on long-term mechanical ventilation in a critical care unit (CCU) in Australia. Using Heideggerian phenomenology, unstructured interviews were undertaken with nine participants. Data were analysed thematically using the method developed by van Manen. Thematic analysis revealed four major themes. This article presents the findings from the theme titled: Reclaiming the everyday world, which describes how the study participants gained comfort from the presence of nurses and their families, sought control over their treatments, and questioned and interpreted the environment, in order to reclaim self. The study highlighted the central role of nurses in patient care, and served as a basis for a number of recommendations, which include recognising the significant role of nurses and family in patient care, and being aware that patients may want more control over their environment and instigate ways to facilitate this. Further research is warranted to examine CCU patients' perceived level of control and power, and to investigate the extent and type of involvement CCU patients would like to have in their care.

Canadian physicians' responses to cross border health care.

PubMed

Runnels, Vivien; Labonté, Ronald; Packer, Corinne; Chaudhry, Sabrina; Adams, Owen; Blackmer, Jeff

2014-04-03

The idea for this survey emanated from desk research and two meetings for researchers that discussed medical tourism and out-of-country health care, which were convened by some of the authors of this article (VR, CP and RL). A Cross Border Health Care Survey was drafted by a number of the authors and administered to Canadian physicians via the Canadian Medical Association's e-panel. The purpose of the survey was to gain an understanding of physicians' experiences with and views of their patients acquiring health care out of country, either as medical tourists (paying out-of-pocket for their care) or out-of-country care patients funded by provincial/territorial public health insurance plans. Quantitative and qualitative results of the survey were analyzed. 631 physicians responded to the survey. Diagnostic procedures were the top-ranked procedure for patients either as out-of-country care recipients or medical tourists. Respondents reported that the main reason why patients sought care abroad was because waiting times in Canada were too long. Some respondents were frustrated with a lack of information about out-of-country procedures upon their patients' return to Canada. The majority of physician respondents agreed that it was their responsibility to provide follow-up care to medical travellers on return to Canada, although a substantial minority disagreed that they had such a responsibility. Cross-border health care, whether government-sanctioned (out-of-country-care) or patient-initiated (medical tourism), is increasing in Canada. Such flows are thought likely to increase with aging populations. Government-sanctioned outbound flows are less problematic than patient-initiated flows but are constrained by low approval rates, which may increase patient initiation. Lack of information and post-return complications pose the greatest concern to Canadian physicians. Further research on both types of flows (government-sanctioned and patient-initiated), and how they affect the Canadian health system, can contribute to a more informed debate about the role of cross-border health care in the future, and how it might be organized and regulated.

Supporting Goal-Oriented Primary Health Care for Seniors with Complex Care Needs Using Mobile Technology: Evaluation and Implementation of the Health System Performance Research Network, Bridgepoint Electronic Patient Reported Outcome Tool.

PubMed

Steele Gray, Carolyn; Wodchis, Walter P; Upshur, Ross; Cott, Cheryl; McKinstry, Brian; Mercer, Stewart; Palen, Ted E; Ramsay, Tim; Thavorn, Kednapa

2016-06-24

Older adults experiencing multiple chronic illnesses are at high risk of hospitalization and health decline if they are unable to manage the significant challenges posed by their health conditions. Goal-oriented care approaches can provide better care for these complex patients, but clinicians find the process of ascertaining goals "too complex and too-time consuming," and goals are often not agreed upon between complex patients and their providers. The electronic patient reported outcomes (ePRO) mobile app and portal offers an innovative approach to creating and monitoring goal-oriented patient-care plans to improve patient self-management and shared decision-making between patients and health care providers. The ePRO tool also supports proactive patient monitoring by the patient, caregiver(s), and health care provider. It was developed with and for older adults with complex care needs as a means to improve their quality of life. Our proposed project will evaluate the use, effectiveness, and value for money of the ePRO tool in a 12-month multicenter, randomized controlled trial in Ontario; targeting individuals 65 or over with two or more chronic conditions that require frequent health care visits to manage their health conditions. Intervention groups using the ePRO tool will be compared with control groups on measures of quality of life, patient experience, and cost-effectiveness. We will also evaluate the implementation of the tool. The proposed project presented in this paper will be funded through the Canadian Institute for Health Research (CIHR) eHealth Innovation Partnerships Program (eHIPP) program (CIHR-348362). The expected completion date of the study is November, 2019. We anticipate our program of work will support improved quality of life and patient self-management, improved patient-centered primary care delivery, and will encourage the adoption of goal-oriented care approaches across primary health care systems. We have partnered with family health teams and quality improvement organizations in Ontario to ensure that our research is practical and that findings are shared widely. We will work with our established international network to develop an implementation framework to support continued adaptation and adoption across Canada and internationally.

Supporting Goal-Oriented Primary Health Care for Seniors with Complex Care Needs Using Mobile Technology: Evaluation and Implementation of the Health System Performance Research Network, Bridgepoint Electronic Patient Reported Outcome Tool

PubMed Central

Wodchis, Walter P; Upshur, Ross; Cott, Cheryl; McKinstry, Brian; Mercer, Stewart; Palen, Ted E; Ramsay, Tim; Thavorn, Kednapa

2016-01-01

Background Older adults experiencing multiple chronic illnesses are at high risk of hospitalization and health decline if they are unable to manage the significant challenges posed by their health conditions. Goal-oriented care approaches can provide better care for these complex patients, but clinicians find the process of ascertaining goals “too complex and too-time consuming,” and goals are often not agreed upon between complex patients and their providers. The electronic patient reported outcomes (ePRO) mobile app and portal offers an innovative approach to creating and monitoring goal-oriented patient-care plans to improve patient self-management and shared decision-making between patients and health care providers. The ePRO tool also supports proactive patient monitoring by the patient, caregiver(s), and health care provider. It was developed with and for older adults with complex care needs as a means to improve their quality of life. Objective Our proposed project will evaluate the use, effectiveness, and value for money of the ePRO tool in a 12-month multicenter, randomized controlled trial in Ontario; targeting individuals 65 or over with two or more chronic conditions that require frequent health care visits to manage their health conditions. Methods Intervention groups using the ePRO tool will be compared with control groups on measures of quality of life, patient experience, and cost-effectiveness. We will also evaluate the implementation of the tool. Results The proposed project presented in this paper will be funded through the Canadian Institute for Health Research (CIHR) eHealth Innovation Partnerships Program (eHIPP) program (CIHR–143559). The expected completion date of the study is November, 2019. Conclusions We anticipate our program of work will support improved quality of life and patient self-management, improved patient-centered primary care delivery, and will encourage the adoption of goal-oriented care approaches across primary health care systems. We have partnered with family health teams and quality improvement organizations in Ontario to ensure that our research is practical and that findings are shared widely. We will work with our established international network to develop an implementation framework to support continued adaptation and adoption across Canada and internationally. PMID:27341765

Translational Educational Research

PubMed Central

Issenberg, S. Barry; Cohen, Elaine R.; Barsuk, Jeffrey H.; Wayne, Diane B.

2012-01-01

Medical education research contributes to translational science (TS) when its outcomes not only impact educational settings, but also downstream results, including better patient-care practices and improved patient outcomes. Simulation-based medical education (SBME) has demonstrated its role in achieving such distal results. Effective TS also encompasses implementation science, the science of health-care delivery. Educational, clinical, quality, and safety goals can only be achieved by thematic, sustained, and cumulative research programs, not isolated studies. Components of an SBME TS research program include motivated learners, curriculum grounded in evidence-based learning theory, educational resources, evaluation of downstream results, a productive research team, rigorous research methods, research resources, and health-care system acceptance and implementation. National research priorities are served from translational educational research. National funding priorities should endorse the contribution and value of translational education research. PMID:23138127

Secure e-mailing between physicians and patients: transformational change in ambulatory care.

PubMed

Garrido, Terhilda; Meng, Di; Wang, Jian J; Palen, Ted E; Kanter, Michael H

2014-01-01

Secure e-mailing between Kaiser Permanente physicians and patients is widespread; primary care providers receive an average of 5 e-mails from patients each workday. However, on average, secure e-mailing with patients has not substantially impacted primary care provider workloads. Secure e-mail has been associated with increased member retention and improved quality of care. Separate studies associated patient portal and secure e-mail use with both decreased and increased use of other health care services, such as office visits, telephone encounters, emergency department visits, and hospitalizations. Directions for future research include more granular analysis of associations between patient-physician secure e-mail and health care utilization.

Primary Care Research in the Patient-Centered Outcomes Research Institute's Portfolio.

PubMed

Selby, Joe V; Slutsky, Jean R

2016-04-01

In their article in this issue, Mazur and colleagues analyze the characteristics of early recipients of funding from the Patient-Centered Outcomes Research Institute (PCORI). Mazur and colleagues note correctly that PCORI has a unique purpose and mission and suggest that it should therefore have a distinct portfolio of researchers and departments when compared with other funders such as the National Institutes of Health (NIH). Responding on behalf of PCORI, the authors of this Commentary agree with the characterization of PCORI's mission as distinct from that of NIH and others. They agree too that data found on PCORI's Web site demonstrate that PCORI's portfolio of researchers and departments is more diverse and more heavily populated with clinician researchers, as would be expected. The authors take issue with Mazur and colleagues' suggestion that because half of clinical visits occur within primary care settings, half of PCORI's funded research should be based in primary care departments. PCORI's portfolio reflects what patients and others tell PCORI are the critical questions. Many of these do, in fact, occur with more complex conditions in specialty care. The authors question whether the research of primary care departments is too narrowly focused and whether it sufficiently considers study of these complex conditions. Research on more complex conditions including heart failure, coronary artery disease, and multiple comorbid conditions could be highly valuable when approached from the primary care perspective, where many of the comparative effectiveness questions first arise.

[Sexually transmitted diseases: the impact of stigma and taboo on current medical care].

PubMed

Badura-Lotter, G

2014-04-01

Sexually transmitted diseases (STD) are probably the most tabooed diseases we know. The many taboos and the related stigmata shape patients' lives and significantly influence health care policies, medical research, and current problems in medical ethics. To better understand these complex influences, the still powerful taboos and related metaphors associated with illness and disease are analyzed within their cultural and historical background and concerning the actual impact on patient care and research. It becomes obvious that research and health care policies cannot be satisfyingly successful in helping people affected by STDs as long as these "nonscientific" factors are not taken into account.

Series: The research agenda for general practice/family medicine and primary health care in Europe. Part 2. Results: Primary care management and community orientation.

PubMed

Hummers-Pradier, Eva; Beyer, Martin; Chevallier, Patrick; Eilat-Tsanani, Sophia; Lionis, Christos; Peremans, Lieve; Petek, Davorina; Rurik, Imre; Soler, Jean Karl; Stoffers, Henri Ejh; Topsever, Pinar; Ungan, Mehmet; van Royen, Paul

2010-03-01

At the WONCA Europe conference 2009 the recently published 'Research Agenda for General Practice/Family Medicine and Primary Health Care in Europe' was presented. It is a background paper and reference manual, providing advocacy of general practice/family medicine (GP/FM) in Europe. The Research Agenda summarizes the evidence relating to the core competencies and characteristics of the WONCA Europe definition of GP/FM, and its implications for general practitioners/family doctors, researchers and policy makers. The European Journal of General Practice publishes a series of articles based on this document. In a first article, background, objectives, and methodology were discussed. In this second article, the results for the core competencies 'primary care management' and 'community orientation' are presented. Though there is a large body of research on various aspects of 'primary care management', it represents a very scattered rather than a meta view. Many studies focus on care for specific diseases, the primary/secondary care interface, or the implications of electronic patient records. Cost efficiency or process indicators of quality are current outcomes. Current literature on community orientation is mainly descriptive, and focuses on either care for specific diseases, or specific patient populations, or on the uptake of preventive services. Most papers correspond poorly to the WONCA concept. For both core competencies, there is a lack of research with a longitudinal perspective and/or relevant health or quality of life outcomes as well as research on patients' preferences and education for organizational aspects of GP/FM.

Post-stroke care after medical rehabilitation in Germany: a systematic literature review of the current provision of stroke patients.

PubMed

Hempler, Isabelle; Woitha, Kathrin; Thielhorn, Ulrike; Farin, Erik

2018-06-19

Although Germany's acute care for stroke patients already has a good reputation, continuous follow-up care is still not widely available, a problem originating in the strict separation of inpatient and outpatient care. This gap in the German health care system does not just lead to patients' potential readmission to inpatient care and compromise the sustainability of what they have accomplished during medical rehabilitation; it also places a burden on caregivers. To illustrate the current procedures on follow-up care of stroke patients in Germany, a systematic literature search was conducted to gather all available evidence. Research articles in the English or German language were searched between 2007 and 2017. Different study designs ranging from non-experimental descriptive studies, expert reports and opinions were included and categorised by two independent researchers. Relevant data was electronically searched through international and national databases and incorporated in a summary grid to investigate research outcomes and realise a narrative synthesis. A literature search was conducted to identify all relevant information on how current follow-up care is carried out and evaluated in Germany. We identified no systematic reviews on this topic, but included a total of 18 publications of various original studies, reviews and expert opinions. Included study populations also differed in either: experts, caregivers or stroke patients, including their viewpoints on the outpatient care situation of stroke patients; to capture their need for assistance or to investigate caregivers need and use for assistance. So far there is no standardised follow-up care in Germany, but this review reveals that multidisciplinary cooperation within occupational groups in outpatient rehabilitation is a key item that can influence and improve the follow-up care of stroke patients. This review was conducted to provide a broadly based overview of the current follow-up care of stroke patients in Germany. Both the new implementation of a standardised, discharge service that supports early support, to be initiated this year and numerous approaches are promising steps into the right direction to close the follow-up gap in German health care provision.

Patients' expectations of private osteopathic care in the UK: a national survey of patients.

PubMed

Leach, C M Janine; Mandy, Anne; Hankins, Matthew; Bottomley, Laura M; Cross, Vinette; Fawkes, Carol A; Fiske, Adam; Moore, Ann P

2013-05-31

Patients' expectations of osteopathic care have been little researched. The aim of this study was to quantify the most important expectations of patients in private UK osteopathic practices, and the extent to which those expectations were met or unmet. The study involved development and application of a questionnaire about patients' expectations of osteopathic care. The questionnaire drew on an extensive review of the literature and the findings of a prior qualitative study involving focus groups exploring the expectations of osteopathic patients. A questionnaire survey of osteopathic patients in the UK was then conducted. Patients were recruited from a random sample of 800 registered osteopaths in private practice across the UK. Patients were asked to complete the questionnaire which asked about 51 aspects of expectation, and post it to the researchers for analysis.The main outcome measures were the patients-perceived level of expectation as assessed by the percentage of positive responses for each aspect of expectation, and unmet expectation as computed from the proportion responding that their expectation "did not happen". 1649 sets of patient data were included in the analysis. Thirty five (69%) of the 51 aspects of expectation were prevalent, with listening, respect and information-giving ranking highest. Only 11 expectations were unmet, the most often unmet were to be made aware that there was a complaints procedure, to find it difficult to pay for osteopathic treatment, and perceiving a lack of communication between the osteopath and their GP. The findings reflected the complexity of providing osteopathic care and meeting patients' expectations. The results provided a generally positive message about private osteopathic practice. The study identified certain gaps between expectations and delivery of care, which can be used to improve the quality of care. The questionnaire is a resource for future research.

Opening the Door: The Experience of Chronic Critical Illness in a Long-Term Acute Care Hospital.

PubMed

Lamas, Daniela J; Owens, Robert L; Nace, R Nicholas; Massaro, Anthony F; Pertsch, Nathan J; Gass, Jonathon; Bernacki, Rachelle E; Block, Susan D

2017-04-01

Chronically critically ill patients have recurrent infections, organ dysfunction, and at least half die within 1 year. They are frequently cared for in long-term acute care hospitals, yet little is known about their experience in this setting. Our objective was to explore the understanding and expectations and goals of these patients and surrogates. We conducted semi-structured interviews with chronically critically ill long-term acute care hospital patients or surrogates. Conversations were recorded, transcribed, and analyzed. One long-term acute care hospital. Chronically critically ill patients, defined by tracheotomy for prolonged mechanical ventilation, or surrogates. Semi-structured conversation about quality of life, expectations, and planning for setbacks. A total of 50 subjects (30 patients and 20 surrogates) were enrolled. Thematic analyses demonstrated: 1) poor quality of life for patients; 2) surrogate stress and anxiety; 3) optimistic health expectations; 4) poor planning for medical setbacks; and 5) disruptive care transitions. Nearly 80% of patient and their surrogate decision makers identified going home as a goal; 38% were at home at 1 year. Our study describes the experience of chronically critically ill patients and surrogates in an long-term acute care hospital and the feasibility of patient-focused research in this setting. Our findings indicate overly optimistic expectations about return home and unmet palliative care needs, suggesting the need for integration of palliative care within the long-term acute care hospital. Further research is also needed to more fully understand the challenges of this growing population of ICU survivors.

Engaging patients and families in communication across transitions of care: an integrative review protocol.

PubMed

Bucknall, Tracey K; Hutchinson, Alison M; Botti, Mari; McTier, Lauren; Rawson, Helen; Hewitt, Nicky A; McMurray, Anne; Marshall, Andrea P; Gillespie, Brigid M; Chaboyer, Wendy

2016-07-01

To describe an integrative review protocol to analyse and synthesize peer-reviewed research evidence in relation to engagement of patients and their families in communication during transitions of care to, in and from acute care settings. Communication at transitions of care in acute care settings can be complex and challenging, with important information about patients not always clearly transferred between responsible healthcare providers. Involving patients and their families in communication during transitions of care may improve the transfer of clinical information and patient outcomes and prevent adverse events during hospitalization and following discharge. Recently, optimizing patient and family participation during care transitions has been acknowledged as central to the implementation of patient-centred care. Integrative review with potential for meta-analysis and application of framework synthesis. The review will evaluate and synthesize qualitative and quantitative research evidence identified through a systematic search. Primary studies will be selected according to inclusion criteria. Data collection, quality appraisal and analysis of the evidence will be conducted by at least two authors. Nine electronic databases (including CINAHL and Medline) will be searched. The search will be restricted to 10 years up to December 2013. Data analysis will include content and thematic analysis. The review will seek to identify all types of patient engagement activities employed during transitions of care communication. The review will identify enablers for and barriers to engagement for patients, families and health professionals. Key strategies and tools for improving patient engagement, clinical communication and promoting patient-centred care will be recommended based on findings. © 2016 The Authors. Journal of Advanced Nursing Published by John Wiley & Sons Ltd.

Reinventing patient-centered computing for the twenty-first century.

PubMed

Goldberg, H S; Morales, A; Gottlieb, L; Meador, L; Safran, C

2001-01-01

Despite evidence over the past decade that patients like and will use patient-centered computing systems in managing their health, patients have remained forgotten stakeholders in advances in clinical computing systems. We present a framework for patient empowerment and the technical realization of that framework in an architecture called CareLink. In an evaluation of the initial deployment of CareLink in the support of neonatal intensive care, we have demonstrated a reduction in the length of stay for very-low birthweight infants, and an improvement in family satisfaction with care delivery. With the ubiquitous adoption of the Internet into the general culture, patient-centered computing provides the opportunity to mend broken health care relationships and reconnect patients to the care delivery process. CareLink itself provides functionality to support both clinical care and research, and provides a living laboratory for the further study of patient-centered computing.

Is it acceptable to video-record palliative care consultations for research and training purposes? A qualitative interview study exploring the views of hospice patients, carers and clinical staff

PubMed Central

Pino, Marco; Parry, Ruth; Feathers, Luke; Faull, Christina

2017-01-01

Background: Research using video recordings can advance understanding of healthcare communication and improve care, but making and using video recordings carries risks. Aim: To explore views of hospice patients, carers and clinical staff about whether videoing patient–doctor consultations is acceptable for research and training purposes. Design: We used semi-structured group and individual interviews to gather hospice patients, carers and clinical staff views. We used Braun and Clark’s thematic analysis. Setting/participants: Interviews were conducted at one English hospice to inform the development of a larger video-based study. We invited patients with capacity to consent and whom the care team judged were neither acutely unwell nor severely distressed (11), carers of current or past patients (5), palliative medicine doctors (7), senior nurses (4) and communication skills educators (5). Results: Participants viewed video-based research on communication as valuable because of its potential to improve communication, care and staff training. Video-based research raised concerns including its potential to affect the nature and content of the consultation and threats to confidentiality; however, these were not seen as sufficient grounds for rejecting video-based research. Video-based research was seen as acceptable and useful providing that measures are taken to reduce possible risks across the recruitment, recording and dissemination phases of the research process. Conclusion: Video-based research is an acceptable and worthwhile way of investigating communication in palliative medicine. Situated judgements should be made about when it is appropriate to involve individual patients and carers in video-based research on the basis of their level of vulnerability and ability to freely consent. PMID:28590153

Secure E-mailing Between Physicians and Patients

PubMed Central

Garrido, Terhilda; Meng, Di; Wang, Jian J.; Palen, Ted E.; Kanter, Michael H.

2014-01-01

Secure e-mailing between Kaiser Permanente physicians and patients is widespread; primary care providers receive an average of 5 e-mails from patients each workday. However, on average, secure e-mailing with patients has not substantially impacted primary care provider workloads. Secure e-mail has been associated with increased member retention and improved quality of care. Separate studies associated patient portal and secure e-mail use with both decreased and increased use of other health care services, such as office visits, telephone encounters, emergency department visits, and hospitalizations. Directions for future research include more granular analysis of associations between patient-physician secure e-mail and health care utilization. PMID:24887522

Balancing the need for big data and patient data privacy--an IT infrastructure for a decentralized emergency care research database.

PubMed

Ahlbrandt, Janko; Brammen, Dominik; Majeed, Raphael W; Lefering, Rolf; Semler, Sebastian C; Thun, Sylvia; Walcher, Felix; Röhrig, Rainer

2014-01-01

Emergency rooms of hospitals provide care to a lot of patients and have great impact on their outcome, so researching the quality of care seems important. Research using registries has yielded impressive results in other areas of medicine. However centralized data-storage has its pitfalls, especially regarding data privacy. We therefore drafted an IT infrastructure that uses decentralized storage to ensure data privacy, but still enables data transfer between participating hospitals. It implements an independent information broker to ensure anonymity of patients. Still it provides a way for researchers to request data and hospitals to contribute data on an opt-in basis. Although not an entirely new approach, the emphasis on data privacy throughout the design is a novel aspect providing a better balance between the need for big sample sizes and patient privacy.

Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol.

PubMed

Hudson, Peter L; Girgis, Afaf; Mitchell, Geoffrey K; Philip, Jenny; Parker, Deborah; Currow, David; Liew, Danny; Thomas, Kristina; Le, Brian; Moran, Juli; Brand, Caroline

2015-12-10

Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50% of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice. Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4. The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting. Australian New Zealand Clinical Trials Registry ACTRN12615000200583.

Patient compliance with telephone triage recommendations: a meta-analytic review.

PubMed

Purc-Stephenson, Rebecca J; Thrasher, Christine

2012-05-01

To systematically investigate the extent to which patients comply with triage advice from telenurses and to identify factors that potentially influence compliance. Findings from 13 studies identified through interdisciplinary research databases (1990-2010) were meta-analyzed. Separate pooled analyses compared patients' compliance rates for emergency services and office care (13 outcomes), emergency services and self care (13 outcomes), and self care and office care (12 outcomes). Overall patient compliance was 62%, but varied by intensity of care recommended with low compliance rates for advice to see a general practitioner. Reasons for noncompliance include patients reporting to have heard a different disposition, patients' intentions and health beliefs. Patient compliance to triage recommendations was influenced by the interactive role of patient perceptions and the quality of provider communication, both of which were mediated by access to health services. Further research is needed to clarify whether noncompliance is attributable to poor communication by the nurse or patient misinterpretation. We highlight the need for communication-skills training in a telephone-consultation context that is patient centered, and specifically addresses building active listening and active advising skills and advantages to structuring the call. Crown Copyright © 2011. Published by Elsevier Ireland Ltd. All rights reserved.

[Shared decision-making in mental health care: a role model from youth mental health care].

PubMed

Westermann, G M A; Maurer, J M G

2015-01-01

In the communication and interaction between doctor and patient in Western health care there has been a paradigm shift from the paternalistic approach to shared decision-making. To summarise the background situation, recent developments and the current level of shared decision-making in (youth) mental health care. We conducted a critical review of the literature relating to the methodology development, research and the use of counselling and decision-making in mental health care. The majority of patients, professionals and other stakeholders consider shared decision-making to be desirable and important for improving the quality and efficiency of care. Up till recently most research and studies have concentrated on helping patients to develop decision-making skills and on showing patients how and where to access information. At the moment more attention is being given to the development of skills and circumstances that will increase patients' interaction with care professionals and patients' emotional involvement in shared decision-making. In mental health for children and adolescents, more often than in adult mental health care, it has been customary to give more attention to these aspects of shared decision-making, particularly during counselling sessions that mark the transition from diagnosis to treatment. This emphasis has been apparent for a long time in textbooks, daily practice, methodology development and research in youth mental health care. Currently, a number of similar developments are taking place in adult mental health care. Although most health professionals support the policy of shared decision-making, the implementation of the policy in mental health care is still at an early stage. In practice, a number of obstacles still have to be surmounted. However, the experience gained with counselling and decision-making in (youth) mental health care may serve as an example to other sections of mental health care and play an important role in the further development of shared decision-making.

Does involving volunteers in the provision of palliative care make a difference to patient and family wellbeing? A systematic review of quantitative and qualitative evidence.

PubMed

Candy, Bridget; France, Rachel; Low, Joe; Sampson, Liz

2015-03-01

Despite the extent of volunteers' contribution to palliative care, and their role in direct patient care, there has been no systematic evaluation of the evidence-base on volunteers in relation to patient and family wellbeing. To critically review research, on the impact of volunteers involved in the direct care of palliative patients and their families. We searched for studies, reporting patient and family data on the impact of volunteer services in palliative care in thirteen citation databases up to May 2013. We included quantitative comparative studies. We also noted any non-comparative studies, enabling us to give a comprehensive review of the existing research. We also included qualitative studies that explored the experiences of patients and families who received volunteer support, potentially illustrating which aspects of volunteer activities patients and families value. We applied quality appraisal criteria to all studies meeting inclusion criteria. Two researchers undertook key review processes. We found eight studies. Only two studies were undertaken outside of North America; one in the Netherlands and the other in Uganda. All studies were in adult palliative care services. All evaluated volunteers were in home care settings, three of the studies included other settings such as hospitals and nursing homes. All of the studies fulfilled our quality appraisal criteria. Six of them were quantitative studies and two were comparative: one found that those families who experienced greater (as opposed to lesser) volunteer involvement were significantly more satisfied with care; the other found that patients survived significantly longer if they had received home visits from a volunteer. Four cross-sectional studies focused on satisfaction ratings. No study considered possible disadvantages or adverse effects of volunteer involvement. Two qualitative studies were identified; both highlighted the uniqueness of the role volunteers may fulfil in care support, from the viewpoint of patients and their families. Further research is needed to ensure the resource of volunteers in palliative care is used appropriately and effectively. Evaluation in well-designed comparative studies is recommended including economic analyses, as are further qualitative studies to explore the roles, benefits and possible adverse effects of volunteers. Evaluation is particularly needed outside of North America and in dedicated hospice facilities. Copyright © 2014 The Authors. Published by Elsevier Ltd.. All rights reserved.

Health care competition, strategic mission, and patient satisfaction: research model and propositions.

PubMed

Rivers, Patrick A; Glover, Saundra H

2008-01-01

In all industries, competition among businesses has long been encouraged as a mechanism to increase value for patients. In other words, competition ensures the provision of better products and services to satisfy the needs of customers This paper aims to develop a model that can be used to empirically investigate a number of complex issues and relationships associated with competition in the health care industry. A literature review was conducted. A total of 50 items of literature related to the subject were reviewed. Various perspectives of competition, the nature of service quality, health system costs, and patient satisfaction in health care are examined. A model of the relationship among these variables is developed. The model depicts patient satisfaction as an outcome measure directly dependent on competition. Quality of care and health care systems costs, while also directly dependent on the strategic mission and goals, are considered as determinants of customer satisfaction as well. The model is discussed in the light of propositions for empirical research. Empirical studies based on the model proposed in this paper should help identify areas with significant impact on patient satisfaction while maintaining high quality of service at lower costs in a competitive environment. The authors develop a research model which included propositions to examine the complex issues of competition in the health care industry.

A roadmap and best practices for organizations to reduce racial and ethnic disparities in health care.

PubMed

Chin, Marshall H; Clarke, Amanda R; Nocon, Robert S; Casey, Alicia A; Goddu, Anna P; Keesecker, Nicole M; Cook, Scott C

2012-08-01

Over the past decade, researchers have shifted their focus from documenting health care disparities to identifying solutions to close the gap in care. Finding Answers: Disparities Research for Change, a national program of the Robert Wood Johnson Foundation, is charged with identifying promising interventions to reduce disparities. Based on our work conducting systematic reviews of the literature, evaluating promising practices, and providing technical assistance to health care organizations, we present a roadmap for reducing racial and ethnic disparities in care. The roadmap outlines a dynamic process in which individual interventions are just one part. It highlights that organizations and providers need to take responsibility for reducing disparities, establish a general infrastructure and culture to improve quality, and integrate targeted disparities interventions into quality improvement efforts. Additionally, we summarize the major lessons learned through the Finding Answers program. We share best practices for implementing disparities interventions and synthesize cross-cutting themes from 12 systematic reviews of the literature. Our research shows that promising interventions frequently are culturally tailored to meet patients' needs, employ multidisciplinary teams of care providers, and target multiple leverage points along a patient's pathway of care. Health education that uses interactive techniques to deliver skills training appears to be more effective than traditional didactic approaches. Furthermore, patient navigation and engaging family and community members in the health care process may improve outcomes for minority patients. We anticipate that the roadmap and best practices will be useful for organizations, policymakers, and researchers striving to provide high-quality equitable care.

Partners at Care Transitions (PACT)—exploring older peoples’ experiences of transitioning from hospital to home in the UK: protocol for an observation and interview study of older people and their families to understand patient experience and involvement in care at transitions

PubMed Central

Birks, Yvonne; Murray, Jenni; Sheard, Laura; Hughes, Lesley; Heyhoe, Jane; Cracknell, Alison; Lawton, Rebecca

2017-01-01

Introduction Length of hospital inpatient stays have reduced. This benefits patients, who prefer to be at home, and hospitals, which can treat more people when stays are shorter. Patients may, however, leave hospital sicker, with ongoing care needs. The transition period from hospital to home can be risky, particularly for older patients with complex health and social needs. Improving patient experience, especially through greater patient involvement, may improve outcomes for patients and is a key indicator of care quality and safety. In this research, we aim to: capture the experiences of older patients and their families during the transition from hospital to home, and identify opportunities for greater patient involvement in care, particularly where this contributes to greater individual-level and organisational-level resilience. Methods and analysis A ‘focused ethnography’ comprising observations, ‘Go-Along’ and semistructured interviews will be used to capture patient and carer experiences during different points in the care transition from admission to 90 days after discharge. We will recruit 30 patients and their carers from six hospital departments across two National Health Service (NHS) Trusts. Analysis of observations and interviews will use a framework approach to identify themes to understand the experience of transitions and generate ideas about how patients could be more actively involved in their care. This will include exploring what ‘good’ care at transitions looks like and seeking out examples of success, as well as recommendations for improvement. Ethics and dissemination Ethical approval was received from the NHS Research Ethics Committee in Wales. The research findings will add to a growing body of knowledge about patient experience of transitions, in particular providing insight into the experiences of patients and carers throughout the transitions process, in ‘real time’. Importantly, the data will be used to inform the development of a patient-centred intervention to improve the quality and safety of transitions. PMID:29196483

Outcomes-focused knowledge translation: a framework for knowledge translation and patient outcomes improvement.

PubMed

Doran, Diane M; Sidani, Souraya

2007-01-01

Regularly accessing information that is current and reliable continues to be a challenge for front-line staff nurses. Reconceptualizing how nurses access information and designing appropriate decision support systems to facilitate timely access to information may be important for increasing research utilization. An outcomes-focused knowledge translation framework was developed to guide the continuous improvement of patient care through the uptake of research evidence and feedback data about patient outcomes. The framework operationalizes the three elements of the PARIHS framework at the point of care. Outcomes-focused knowledge translation involves four components: (a) patient outcomes measurement and real-time feedback about outcomes achievement; (b) best-practice guidelines, embedded in decision support tools that deliver key messages in response to patient assessment data; (c) clarification of patients' preferences for care; and (d) facilitation by advanced practice nurses and practice leaders. In this paper the framework is described and evidence is provided to support theorized relationships among the concepts in the framework. The framework guided the design of a knowledge translation intervention aimed at continuous improvement of patient care and evidence-based practice, which are fostered through real-time feedback data about patient outcomes, electronic access to evidence-based resources at the point of care, and facilitation by advanced practice nurses. The propositions in the framework need to be empirically tested through future research.

Patient Satisfaction with Kimbrough Ambulatory Care Center

DTIC Science & Technology

1997-02-01

few are going to opt to change health plans. 14. SUBJECT TERMS PATIENT SATISFACTION; CONSUMER SATISFACTION; SURVEY 15. NUMBER OF PAGES 57 16...to address is overall patient satisfaction with Kimbrough’s current health care system. I surveyed customers on: how satisfied or dissatisfied they...research project was designed to determine how satisfied customers are with Kimbrough Ambulatory Care Center. A patient satisfaction survey developed by

An operations-partnered evaluation of care redesign for high-risk patients in the Veterans Health Administration (VHA): Study protocol for the PACT Intensive Management (PIM) randomized quality improvement evaluation.

PubMed

Chang, Evelyn T; Zulman, Donna M; Asch, Steven M; Stockdale, Susan E; Yoon, Jean; Ong, Michael K; Lee, Martin; Simon, Alissa; Atkins, David; Schectman, Gordon; Kirsh, Susan R; Rubenstein, Lisa V

2018-06-01

Patient-centered medical homes have made great strides providing comprehensive care for patients with chronic conditions, but may not provide sufficient support for patients at highest risk for acute care use. To address this, the Veterans Health Administration (VHA) initiated a five-site demonstration project to evaluate the effectiveness of augmenting the VA's Patient Aligned Care Team (PACT) medical home with PACT Intensive Management (PIM) teams for Veterans at highest risk for hospitalization. Researchers partnered with VHA leadership to design a mixed-methods prospective multi-site evaluation that met leadership's desire for a rigorous evaluation conducted as quality improvement rather than research. We conducted a randomized QI evaluation and assigned high-risk patients to participate in PIM and compared them with high-risk Veterans receiving usual care through PACT. The summative evaluation examines whether PIM: 1) decreases VHA emergency department and hospital use; 2) increases satisfaction with VHA care; 3) decreases provider burnout; and 4) generates positive returns on investment. The formative evaluation aims to support improved care for high-risk patients at demonstration sites and to inform future initiatives for high-risk patients. The evaluation was reviewed by representatives from the VHA Office of Research and Development and the Office of Research Oversight and met criteria for quality improvement. VHA aims to function as a learning organization by rapidly implementing and rigorously testing QI innovations prior to final program or policy development. We observed challenges and opportunities in designing an evaluation consistent with QI standards and operations priorities, while also maintaining scientific rigor. This trial was retrospectively registered at ClinicalTrials.gov on April 3, 2017: NCT03100526. Protocol v1, FY14-17. Copyright © 2018 Elsevier Inc. All rights reserved.

Achieving Value in Primary Care: The Primary Care Value Model.

PubMed

Rollow, William; Cucchiara, Peter

2016-03-01

The patient-centered medical home (PCMH) model provides a compelling vision for primary care transformation, but studies of its impact have used insufficiently patient-centered metrics with inconsistent results. We propose a framework for defining patient-centered value and a new model for value-based primary care transformation: the primary care value model (PCVM). We advocate for use of patient-centered value when measuring the impact of primary care transformation, recognition, and performance-based payment; for financial support and research and development to better define primary care value-creating activities and their implementation; and for use of the model to support primary care organizations in transformation. © 2016 Annals of Family Medicine, Inc.

A model for incorporating patient and stakeholder voices in a learning health care network: Washington State's Comparative Effectiveness Research Translation Network.

PubMed

Devine, Emily Beth; Alfonso-Cristancho, Rafael; Devlin, Allison; Edwards, Todd C; Farrokhi, Ellen T; Kessler, Larry; Lavallee, Danielle C; Patrick, Donald L; Sullivan, Sean D; Tarczy-Hornoch, Peter; Yanez, N David; Flum, David R

2013-08-01

To describe the inaugural comparative effectiveness research (CER) cohort study of Washington State's Comparative Effectiveness Research Translation Network (CERTAIN), which compares invasive with noninvasive treatments for peripheral artery disease, and to focus on the patient centeredness of this cohort study by describing it within the context of a newly published conceptual framework for patient-centered outcomes research (PCOR). The peripheral artery disease study was selected because of clinician-identified uncertainty in treatment selection and differences in desired outcomes between patients and clinicians. Patient centeredness is achieved through the "Patient Voices Project," a CERTAIN initiative through which patient-reported outcome (PRO) instruments are administered for research and clinical purposes, and a study-specific patient advisory group where patients are meaningfully engaged throughout the life cycle of the study. A clinician-led research advisory panel follows in parallel. Primary outcomes are PRO instruments that measure function, health-related quality of life, and symptoms, the latter developed with input from the patients. Input from the patient advisory group led to revised retention procedures, which now focus on short-term (3-6 months) follow-up. The research advisory panel is piloting a point-of-care, patient assessment checklist, thereby returning study results to practice. The cohort study is aligned with the tenets of one of the new conceptual frameworks for conducting PCOR. The CERTAIN's inaugural cohort study may serve as a useful model for conducting PCOR and creating a learning health care network. Copyright © 2013 Elsevier Inc. All rights reserved.

Dependence and caring in clinical communication: the relevance of attachment and other theories.

PubMed

Salmon, Peter; Young, Bridget

2009-03-01

Clinical relationships are usually asymmetric, being defined by patients' dependence and practitioners' care. Our aims are to: (i) identify literature that can contribute to theory for researching and teaching clinical communication from this perspective; (ii) highlight where theoretical development is needed; and (iii) test the utility of the emerging theory by identifying whether it leads to implications for educational practice. Selective and critical review of research concerned with dependence and caring in clinical and non-clinical relationships. Attachment theory helps to understand patients' need to seek safety in relationships with expert and authoritative practitioners but is of limited help in understanding practitioners' caring. Different theories that formulate practitioners' care as altruistic, rewarded by personal connection or as a contract indicate the potential importance of practitioners' emotions, values and sense of role in understanding their clinical communication. Extending the theoretical grounding of clinical communication can accommodate patients' dependence and practitioners' caring without return to medical paternalism. A broader theoretical base will help educators to address the inherent subjectivity of clinical relationships, and researchers to distinguish scientific questions about how patients and clinicians are from normative questions about how they should be.

A practical guide to scoring a Multi-Dimensional Health Assessment Questionnaire (MDHAQ) and Routine Assessment of Patient Index Data (RAPID) scores in 10-20 seconds for use in standard clinical care, without rulers, calculators, websites or computers.

PubMed

Pincus, Theodore; Yazici, Yusuf; Bergman, Martin

2007-08-01

The American College of Rheumatology Core Data Set for rheumatoid arthritis (RA) includes 3 measures which are found on a patient self-report questionnaire, physical function, pain, and patient estimate of global status. These measures are included in all clinical trials, but not assessed at most encounters in standard rheumatology care. Rheumatologists may have experience with lengthy research questionnaires in clinical trials and other clinical research, which (appropriately) are regarded as relatively cumbersome research tools and do not contribute to clinical care. A format of a questionnaire known as the multidimensional health assessment questionnaire (MDHAQ) has been developed for standard rheumatology care to contribute to rheumatology clinical care in daily practice. The 3 scores for physical function, pain, and global status can be "eyeballed" in a second or two and formally scored into a composite index known as rheumatology assessment patient index data (RAPID) in about 10 seconds. This chapter provides a brief tutorial designed to instruct rheumatologists and their staffs regarding how to use and score the MDHAQ and RAPID in standard clinical care.

How nurses and their work environment affect patient experiences of the quality of care: a qualitative study

PubMed Central

2014-01-01

Background Healthcare organisations monitor patient experiences in order to evaluate and improve the quality of care. Because nurses spend a lot of time with patients, they have a major impact on patient experiences. To improve patient experiences of the quality of care, nurses need to know what factors within the nursing work environment are of influence. The main focus of this research was to comprehend the views of Dutch nurses on how their work and their work environment contribute to positive patient experiences. Methods A descriptive qualitative research design was used to collect data. Four focus groups were conducted, one each with 6 or 7 registered nurses in mental health care, hospital care, home care and nursing home care. A total of 26 nurses were recruited through purposeful sampling. The interviews were audiotaped, transcribed and subjected to thematic analysis. Results The nurses mentioned essential elements that they believe would improve patient experiences of the quality of nursing care: clinically competent nurses, collaborative working relationships, autonomous nursing practice, adequate staffing, control over nursing practice, managerial support and patient-centred culture. They also mentioned several inhibiting factors, such as cost-effectiveness policy and transparency goals for external accountability. Nurses feel pressured to increase productivity and report a high administrative workload. They stated that these factors will not improve patient experiences of the quality of nursing care. Conclusions According to participants, a diverse range of elements affect patient experiences of the quality of nursing care. They believe that incorporating these elements into daily nursing practice would result in more positive patient experiences. However, nurses work in a healthcare context in which they have to reconcile cost-efficiency and accountability with their desire to provide nursing care that is based on patient needs and preferences, and they experience a conflict between these two approaches. Nurses must gain autonomy over their own practice in order to improve patient experiences. PMID:24923663

Leadership models in health care - a case for servant leadership.

PubMed

Trastek, Victor F; Hamilton, Neil W; Niles, Emily E

2014-03-01

Our current health care system is broken and unsustainable. Patients desire the highest quality care, and it needs to cost less. To regain public trust, the health care system must change and adapt to the current needs of patients. The diverse group of stakeholders in the health care system creates challenges for improving the value of care. Health care providers are in the best position to determine effective ways of improving the value of care. To create change, health care providers must learn how to effectively lead patients, those within health care organizations, and other stakeholders. This article presents servant leadership as the best model for health care organizations because it focuses on the strength of the team, developing trust and serving the needs of patients. As servant leaders, health care providers may be best equipped to make changes in the organization and in the provider-patient relationship to improve the value of care for patients. Copyright © 2014 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc. All rights reserved.

Interprofessional education about patient decision support in specialty care.

PubMed

Politi, Mary C; Pieterse, Arwen H; Truant, Tracy; Borkhoff, Cornelia; Jha, Vikram; Kuhl, Laura; Nicolai, Jennifer; Goss, Claudia

2011-11-01

Specialty care involves services provided by health professionals who focus on treating diseases affecting one body system. In contrast to primary care - aimed at providing continuous, comprehensive care - specialty care often involves intermittent episodes of care focused around specific medical conditions. In addition, it typically includes multiple providers who have unique areas of expertise that are important in supporting patients' care. Interprofessional care involves multiple professionals from different disciplines collaborating to provide an integrated approach to patient care. For patients to experience continuity of care across interprofessional providers, providers need to communicate and maintain a shared sense of responsibility to their patients. In this article, we describe challenges inherent in providing interprofessional patient decision support in specialty care. We propose ways for providers to engage in interprofessional decision support and discuss promising approaches to teaching an interprofessional decision support to specialty care providers. Additional evaluation and empirical research are required before further recommendations can be made about education for interprofessional decision support in specialty care.

Canadian physicians’ responses to cross border health care

PubMed Central

2014-01-01

Background The idea for this survey emanated from desk research and two meetings for researchers that discussed medical tourism and out-of-country health care, which were convened by some of the authors of this article (VR, CP and RL). Methods A Cross Border Health Care Survey was drafted by a number of the authors and administered to Canadian physicians via the Canadian Medical Association’s e-panel. The purpose of the survey was to gain an understanding of physicians’ experiences with and views of their patients acquiring health care out of country, either as medical tourists (paying out-of-pocket for their care) or out-of-country care patients funded by provincial/territorial public health insurance plans. Quantitative and qualitative results of the survey were analyzed. Results 631 physicians responded to the survey. Diagnostic procedures were the top-ranked procedure for patients either as out-of-country care recipients or medical tourists. Respondents reported that the main reason why patients sought care abroad was because waiting times in Canada were too long. Some respondents were frustrated with a lack of information about out-of-country procedures upon their patients’ return to Canada. The majority of physician respondents agreed that it was their responsibility to provide follow-up care to medical travellers on return to Canada, although a substantial minority disagreed that they had such a responsibility. Conclusions Cross-border health care, whether government-sanctioned (out-of-country-care) or patient-initiated (medical tourism), is increasing in Canada. Such flows are thought likely to increase with aging populations. Government-sanctioned outbound flows are less problematic than patient-initiated flows but are constrained by low approval rates, which may increase patient initiation. Lack of information and post-return complications pose the greatest concern to Canadian physicians. Further research on both types of flows (government-sanctioned and patient-initiated), and how they affect the Canadian health system, can contribute to a more informed debate about the role of cross-border health care in the future, and how it might be organized and regulated. PMID:24708810

Medical residents reflect on their prejudices toward poverty: a photovoice training project.

PubMed

Loignon, Christine; Boudreault-Fournier, Alexandrine; Truchon, Karoline; Labrousse, Yanouchka; Fortin, Bruno

2014-12-31

Clinicians face challenges in delivering care to socioeconomically disadvantaged patients. While both the public and academic sectors recognize the importance of addressing social inequities in healthcare, there is room for improvement in the training of family physicians, who report being ill-equipped to provide care that is responsive to the living conditions of these patients. This study explored: (i) residents' perceptions and experience in relation to providing care for socioeconomically disadvantaged patients, and (ii) how participating in a photovoice study helped them uncover and examine some of their prejudices and assumptions about poverty. We conducted a participatory photovoice study. Participants were four family medicine residents, two medical supervisors, and two researchers. Residents attended six photovoice meetings at which they discussed photos they had taken. In collaboration with the researchers, the participants defined the research questions, took photos, and participated in data analysis and results dissemination. Meetings were recorded and transcribed for analysis, which consisted of coding, peer debriefing, thematic analysis, and interpretation. The medical residents uncovered and examined their own prejudices and misconceptions about poverty. They reported feeling unprepared to provide care to socioeconomically disadvantaged patients. Supported by medical supervisors and researchers, the residents underwent a three-phase reflexive process of: (1) engaging reflexively, (2) break(ing) through, and (3) taking action. The results indicated that medical residents subsequently felt encouraged to adopt a care approach that helped them overcome the social distance between themselves and their socioeconomically disadvantaged patients. This study highlights the importance of providing medical training on issues related to poverty and increasing awareness about social inequalities in medical education to counteract prejudices toward socioeconomically disadvantaged patients. Future studies should examine which elective courses and training could provide suitable tools to clinicians to improve their competence in delivering care to socioeconomically disadvantaged patients.

Studying the clinical encounter with the Adaptive Leadership framework.

PubMed

Bailey, Donald E; Docherty, Sharron L; Adams, Judith A; Carthron, Dana L; Corazzini, Kirsten; Day, Jennifer R; Neglia, Elizabeth; Thygeson, Marcus; Anderson, Ruth A

2012-08-01

In this paper we discuss the concept of leadership as a personal capability, not contingent on one's position in a hierarchy. This type of leadership allows us to reframe both the care-giving and organizational roles of nurses and other front-line clinical staff. Little research has been done to explore what leadership means at the point of care, particularly in reference to the relationship between health care practitioners and patients and their family caregivers. The Adaptive Leadership framework, based on complexity science theory, provides a useful lens to explore practitioners' leadership behaviors at the point of care. This framework proposes that there are two broad categories of challenges that patients face: technical and adaptive. Whereas technical challenges are addressed with technical solutions that are delivered by practitioners, adaptive challenges require the patient (or family member) to adjust to a new situation and to do the work of adapting, learning, and behavior change. Adaptive leadership is the work that practitioners do to mobilize and support patients to do the adaptive work. The purpose of this paper is to describe this framework and demonstrate its application to nursing research. We demonstrate the framework's utility with five exemplars of nursing research problems that range from the individual to the system levels. The framework has the potential to guide researchers to ask new questions and to gain new insights into how practitioners interact with patients at the point of care to increase the patient's ability to tackle challenging problems and improve their own health care outcomes. It is a potentially powerful framework for developing and testing a new generation of interventions to address complex issues by harnessing and learning about the adaptive capabilities of patients within their life contexts.

The view of pulmonologists on palliative care for patients with COPD: a survey study

PubMed Central

Duenk, RG; Verhagen, C; Dekhuijzen, PNR; Vissers, KCP; Engels, Y; Heijdra, Y

2017-01-01

Introduction Early palliative care is not a common practice for patients with COPD. Important barriers are the identification of patients for palliative care and the organization of such care in this patient group. Objective Pulmonologists have a central role in providing good quality palliative care for patients with COPD. To guide future research and develop services, their view on palliative care for these patients was explored. Methods A survey study was performed by the members of the Netherlands Association of Physicians for Lung Diseases and Tuberculosis. Results The 256 respondents (31.8%) covered 85.9% of the hospital organizations in the Netherlands. Most pulmonologists (92.2%) indicated to distinguish a palliative phase in the COPD trajectory, but there was no consensus about the different criteria used for its identification. Aspects of palliative care in COPD considered important were advance care planning conversation (82%), communication between pulmonologist and general practitioner (77%), and identification of the palliative phase (75.8%), while the latter was considered the most important aspect for improvement (67.6%). Pulmonologists indicated to prefer organizing palliative care for hospitalized patients with COPD themselves (55.5%), while 30.9% indicated to prefer cooperation with a specialized palliative care team (SPCT). In the ambulatory setting, a multidisciplinary cooperation between pulmonologist, general practitioner, and a respiratory nurse specialist was preferred (71.1%). Conclusion To encourage pulmonologists to timely initiate palliative care in COPD, we recommend to conduct further research into more specific identification criteria. Furthermore, pulmonologists should improve their skills of palliative care, and the members of the SPCT should be better informed about the management of COPD to improve care during hospitalization. Communication between pulmonologist and general practitioner should be emphasized in training to improve palliative care in the ambulatory setting. PMID:28176900

Patient loyalty model.

PubMed

Sumaedi, Sik; Bakti, I Gede Mahatma Yuda; Rakhmawati, Tri; Astrini, Nidya Judhi; Yarmen, Medi; Widianti, Tri

2015-07-06

This study aims to investigate the simultaneous effect of subjective norm, perceived behavioral control and trust on patient loyalty. The empirical data were collected through survey. The respondents of the survey are 157 patients of a health-care service institution in Bogor, Indonesia. Multiple regressions analysis was performed to test the conceptual model and the proposed hypotheses. The findings showed that subjective norm and trust influence patient loyalty positively. However, this research also found that perceived behavioral control does not influence patient loyalty significantly. The survey was only conducted at one health-care service institution in Bogor, Indonesia. In addition, convenience sampling method was used. These conditions may cause that the research results can not be generalized to the other contexts. Therefore, replication research is needed to test the stability of the findings in the other contexts. Health-care service institutions need to pay attention to trust and subjective norm to establish patient loyalty. This study is believed to be the first to develop and test patient loyalty model that includes subjective norm, perceived behavioral control and trust.

Forensic nursing interventions with patients with personality disorder: a holistic approach.

PubMed

Byrt, Richard

2013-01-01

Research findings suggest that nursing assessment and care and psychotherapy of forensic patients with personality disorder should be based on a holistic approach that addresses a wide range of their needs. Such an approach should be in collaboration with patients, informal carers, and other professionals and informed by appropriate education, training, clinical supervision, and support. Holistic care includes areas (such as physical health, cultural, spiritual, and psychosexual needs) that are addressed to a limited extent in the literature on patients with personality disorder. Despite limitations in research evidence, findings suggest that some patients with personality disorder benefit from psychotherapies, sometimes facilitated by nurse-therapists, and therapeutic community principles. These interventions should take account of patients' cultural and spiritual needs and perspectives. Helping patients to manage anger has potentially positive consequences for their physical health, personal and work relationships, and other areas. Research is needed to consider how to deliver holistic care with limited resources and in organizations, such as prisons, with conflicting goals.

Hope for health and health care.

PubMed

Stempsey, William E

2015-02-01

Virtually all activities of health care are motivated at some level by hope. Patients hope for a cure; for relief from pain; for a return home. Physicians hope to prevent illness in their patients; to make the correct diagnosis when illness presents itself; that their prescribed treatments will be effective. Researchers hope to learn more about the causes of illness; to discover new and more effective treatments; to understand how treatments work. Ultimately, all who work in health care hope to offer their patients hope. In this paper, I offer a brief analysis of hope, considering the definitions of Hobbes, Locke, Hume and Thomas Aquinas. I then differentiate shallow and deep hope and show how hope in health care can remain shallow. Next, I explore what a philosophy of deep hope in health care might look like, drawing important points from Ernst Bloch and Gabriel Marcel. Finally, I suggest some implications of this philosophy of hope for patients, physicians, and researchers.

Achieving the "triple aim" for inborn errors of metabolism: a review of challenges to outcomes research and presentation of a new practice-based evidence framework.

PubMed

Potter, Beth K; Chakraborty, Pranesh; Kronick, Jonathan B; Wilson, Kumanan; Coyle, Doug; Feigenbaum, Annette; Geraghty, Michael T; Karaceper, Maria D; Little, Julian; Mhanni, Aizeddin; Mitchell, John J; Siriwardena, Komudi; Wilson, Brenda J; Syrowatka, Ania

2013-06-01

Across all areas of health care, decision makers are in pursuit of what Berwick and colleagues have called the "triple aim": improving patient experiences with care, improving health outcomes, and managing health system impacts. This is challenging in a rare disease context, as exemplified by inborn errors of metabolism. There is a need for evaluative outcomes research to support effective and appropriate care for inborn errors of metabolism. We suggest that such research should consider interventions at both the level of the health system (e.g., early detection through newborn screening, programs to provide access to treatments) and the level of individual patient care (e.g., orphan drugs, medical foods). We have developed a practice-based evidence framework to guide outcomes research for inborn errors of metabolism. Focusing on outcomes across the triple aim, this framework integrates three priority themes: tailoring care in the context of clinical heterogeneity; a shift from "urgent care" to "opportunity for improvement"; and the need to evaluate the comparative effectiveness of emerging and established therapies. Guided by the framework, a new Canadian research network has been established to generate knowledge that will inform the design and delivery of health services for patients with inborn errors of metabolism and other rare diseases.

Patient engagement: What partnering with patient in research is all about.

PubMed

Duffett, Lisa

2017-02-01

The inclusion of patients on important decision related to healthcare has marked a significant 'patient revolution' during the last several decades. Patients now played active roles in personal health decisions, healthcare delivery and policy making, and the development of clinical practice guidelines. Such inclusion of patients' values has resulted in largely positive effects. The next wave of this 'patient revolution' is active and meaningful engagement with patients in health related research. Similar to other aspects of healthcare, it is increasingly recognized that experienced patients, their families, and caregivers, have a wealth of knowledge that comes from living and experiencing a medical condition. By understanding and valuing this experience-based knowledge, research priority setting, research study design, trial conduct, analysis of results and knowledge dissemination can be positively influenced. Patients can challenge our assumptions, align research with the needs of patients, increase transparency and trust in research, and lead to research that has a greater impact on the ultimate care of patients. This new approach to research is timed well with a larger movement towards simple, pragmatic clinical trials better reflecting realistic patient care. While there is still much to be learned about the best methods and exact impacts of patient engagement in research, preliminary results are promising and future venous thromboembolism research will likely benefit from the adoption of patient engagement in research. Copyright © 2016 Elsevier Ltd. All rights reserved.

An analysis of contextual information relevant to medical care unexpectedly volunteered to researchers by asthma patients.

PubMed

Black, Heather L; Priolo, Chantel; Gonzalez, Rodalyn; Geer, Sabrina; Adam, Bariituu; Apter, Andrea J

2012-09-01

To describe and categorize contextual information relevant to patients' medical care unexpectedly volunteered to research personnel as part of a patient advocate (PA) intervention to facilitate access health care, communication with medical personnel, and self-management of a chronic disease such as asthma. We adapted a patient navigator intervention, to overcome barriers to access and communication for adults with moderate or severe asthma. Informed by focus groups of patients and providers, our PAs facilitated preparation for a visit with an asthma provider, attended the visit, confirmed understanding, and assisted with post-visit activities. During meetings with researchers, either for PA activities or for data collection, participants frequently volunteered personal and medical information relevant for achieving successful self-management that was not routinely shared with medical personnel. For this project, researchers journaled information not captured by the structured questionnaires and protocol. Using a qualitative analysis, we describe (1) researchers' journals of these unique communications; (2) their relevance for accomplishing self-management; (3) PAs' formal activities including teach-back, advocacy, and facilitating appointment making; and (4) observations of patients' interactions with the clinical practices. In 83 journals, patients' social support (83%), health (68%), and deportment (69%) were described. PA assistance with navigating the medical system (59%), teach-back (46%), and observed interactions with patient and medical staff (76%) were also journaled. Implicit were ways patients and practices could overcome barriers to access and communication. These journals describe the importance of seeking contextual and medically relevant information from all patients and, especially, those with significant morbidities, prompting patients for barriers to access to health care, and confirming understanding of medical information.

Shared Decision Making in the Emergency Department: Development of a Policy-Relevant Patient-Centered Research Agenda

PubMed Central

Grudzen, Corita R.; Anderson, Jana R.; Carpenter, Christopher R.; Hess, Erik P.

2016-01-01

SUMMARY SDM in emergency medicine has the potential to improve the quality, safety, and outcomes of ED patients. Given that the ED is the gateway to care for patients with a variety of illnesses and injuries, SDM in the ED is relevant to numerous healthcare disciplines. We conducted a patient-centered one-day conference to define and develop a high-priority, timely research agenda. Participants included researchers, patients, stakeholder organizations, and content experts across many areas of medicine, health policy agencies, and federal and foundation funding organizations. The results of this conference published in this issue of Academic Emergency Medicine will provide an essential summary of the future research priorities for SDM to increase quality of care and patient-centered outcomes. PMID:27396583

Transferring information to an out-of-hours primary care service for patients with palliative care needs: an action research study to improve the use of handover forms.

PubMed

Asprey, Anthea; Richards, Suzanne H; Wright, Christine; Seamark, Clare; Seamark, David; Moxon, Jane

2013-01-01

To work with service users and providers to optimise the design and implementation of handover forms to support the transfer of information between daytime and out-of-hours primary care services for patients with palliative care needs. There is a need for improved informational continuity between daytime and out-of-hours primary care services for patients with palliative care needs. Research suggests that while handover forms are vital to ensure continuity of care, they remain underused for such patients. Audit work in an out-of-hours primary care service in South West England identified that their current system of handover forms was underused. An action research study consisting of two phases was undertaken. In phase one, the views of general practitioners and nurses working in the out-of-hours and daytime primary care services (29 health professionals) in Devon (population c.1.4 million) and patients with palliative care needs and their carers (8 participants) were investigated using qualitative interviews and focus group methods. Participants' views on the content and use of handover forms, and of the systems supporting their generation were sought. In phase two, additional feedback from the health professional stakeholder groups was collected and collaborative work undertaken with the out-of-hours service to implement recommendations emerging from the qualitative research. Findings Respondents identified variable use of handover forms and inconsistent practice in terms of: who was responsible for generating and updating forms; when and where they were discussed in primary care; the criteria used to define which patient needed a form; and the information forms should contain. There was uncertainty about how handover forms were used by the out-of-hours service and concerns about incomplete access to forms for certain groups of staff. An action plan to improve the existing system was developed. This included distribution of educational materials (desktop guide, newsletter) to key stakeholders, and the modification of information systems to facilitate the updating of messages and the accessibility of electronic records for previously under-served staff.

A Qualitative Study of the Change-of-Shift Report at the Patients' Bedside.

PubMed

Grimshaw, John; Hatch, Daniel; Willard, Melissa; Abraham, Sam

Concerns about patient bedside change-of-shift reporting at a community hospital in northern Indiana stimulated the development of this qualitative phenomenological study. A review of the literature revealed a research deficit in acute care nurses' perceptions of bedside reporting in relation to compliance. The research question addressed in this study was, "What are acute care nurses' perceptions of the change-of-shift report at the patients' bedside?" Personal interviews were conducted on 7 medical, surgical, and intensive care unit nurse participants at a community hospital in northern Indiana. Five themes were identified from the collected data, which included the time factor, continuity of care, visualization, and challenges in the communication of discreet information.

Structure and Functions of Pediatric Aerodigestive Programs: A Consensus Statement.

PubMed

Boesch, R Paul; Balakrishnan, Karthik; Acra, Sari; Benscoter, Dan T; Cofer, Shelagh A; Collaco, Joseph M; Dahl, John P; Daines, Cori L; DeAlarcon, Alessandro; DeBoer, Emily M; Deterding, Robin R; Friedlander, Joel A; Gold, Benjamin D; Grothe, Rayna M; Hart, Catherine K; Kazachkov, Mikhail; Lefton-Greif, Maureen A; Miller, Claire Kane; Moore, Paul E; Pentiuk, Scott; Peterson-Carmichael, Stacey; Piccione, Joseph; Prager, Jeremy D; Putnam, Philip E; Rosen, Rachel; Rutter, Michael J; Ryan, Matthew J; Skinner, Margaret L; Torres-Silva, Cherie; Wootten, Christopher T; Zur, Karen B; Cotton, Robin T; Wood, Robert E

2018-02-07

Aerodigestive programs provide coordinated interdisciplinary care to pediatric patients with complex congenital or acquired conditions affecting breathing, swallowing, and growth. Although there has been a proliferation of programs, as well as national meetings, interest groups and early research activity, there is, as of yet, no consensus definition of an aerodigestive patient, standardized structure, and functions of an aerodigestive program or a blueprint for research prioritization. The Delphi method was used by a multidisciplinary and multi-institutional panel of aerodigestive providers to obtain consensus on 4 broad content areas related to aerodigestive care: (1) definition of an aerodigestive patient, (2) essential construct and functions of an aerodigestive program, (3) identification of aerodigestive research priorities, and (4) evaluation and recognition of aerodigestive programs and future directions. After 3 iterations of survey, consensus was obtained by either a supermajority of 75% or stability in median ranking on 33 of 36 items. This included a standard definition of an aerodigestive patient, level of participation of specific pediatric disciplines in a program, essential components of the care cycle and functions of the program, feeding and swallowing assessment and therapy, procedural scope and volume, research priorities and outcome measures, certification, coding, and funding. We propose the first consensus definition of the aerodigestive care model with specific recommendations regarding associated personnel, infrastructure, research, and outcome measures. We hope that this may provide an initial framework to further standardize care, develop clinical guidelines, and improve outcomes for aerodigestive patients. Copyright © 2018 by the American Academy of Pediatrics.

The experience of intensive care nurses caring for patients with delirium: A phenomenological study.

PubMed

LeBlanc, Allana; Bourbonnais, Frances Fothergill; Harrison, Denise; Tousignant, Kelly

2018-02-01

The purpose of this research was to seek to understand the lived experience of intensive care nurses caring for patients with delirium. The objectives of this inquiry were: 1) To examine intensive care nurses' experiences of caring for adult patients with delirium; 2) To identify factors that facilitate or hinder intensive care nurses caring for these patients. This study utilised an interpretive phenomenological approach as described by van Manen. Individual conversational interviews were conducted with eight intensive care nurses working in a tertiary level, university-affiliated hospital in Canada. The essence of the experience of nurses caring for patients with delirium in intensive care was revealed to be finding a way to help them come through it. Six main themes emerged: It's Exhausting; Making a Picture of the Patient's Mental Status; Keeping Patients Safe: It's aReally Big Job; Everyone Is Unique; Riding It Out With Families and Taking Every Experience With You. The findings contribute to an understanding of how intensive care nurses help patients and their families through this complex and distressing experience. Copyright © 2017 Elsevier Ltd. All rights reserved.

Enhancing Shared Decision Making Through Carefully Designed Interventions That Target Patient And Provider Behavior.

PubMed

Tai-Seale, Ming; Elwyn, Glyn; Wilson, Caroline J; Stults, Cheryl; Dillon, Ellis C; Li, Martina; Chuang, Judith; Meehan, Amy; Frosch, Dominick L

2016-04-01

Patient-provider communication and shared decision making are essential for primary care delivery and are vital contributors to patient experience and health outcomes. To alleviate communication shortfalls, we designed a novel, multidimensional intervention aimed at nudging both patients and primary care providers to communicate more openly. The intervention was tested against an existing intervention, which focused mainly on changing patients' behaviors, in four primary care clinics involving 26 primary care providers and 300 patients. Study results suggest that compared to usual care, both the novel and existing interventions were associated with better patient reports of how well primary care providers engaged them in shared decision making. Future research should build on the work in this pilot to rigorously examine the comparative effectiveness and scalability of these interventions to improve shared decision making at the point of care. Project HOPE—The People-to-People Health Foundation, Inc.

Damage control – trauma care in the first hour and beyond: a clinical review of relevant developments in the field of trauma care

PubMed Central

Midwinter, M

2013-01-01

Introduction Trauma provision in the UK is a topic of interest. Regional trauma networks and centres are evolving and research is blossoming, but what bearing does all this have on the care that is delivered to the individual patient? This article aims to provide an overview of key research concepts in the field of trauma care, to guide the clinician in decision making in the management of major trauma. Methods The Ovid MEDLINE®, EMBASE™ and PubMed databases were used to search for relevant articles on haemorrhage control, damage control resuscitation and its exceptions, massive transfusion protocols, prevention and correction of coagulopathy, acidosis and hypothermia, and damage-control surgery. Findings A wealth of research is available and a broad range has been reviewed to summarise significant developments in trauma care. Research has been categorised into disciplines and it is hoped that by considering each, a tailored management plan for the individual trauma patient will evolve, potentially improving patient outcome. PMID:23827287

Effect of patient navigation on satisfaction with cancer-related care.

PubMed

Wells, Kristen J; Winters, Paul C; Jean-Pierre, Pascal; Warren-Mears, Victoria; Post, Douglas; Van Duyn, Mary Ann S; Fiscella, Kevin; Darnell, Julie; Freund, Karen M

2016-04-01

Despite growing popularity of patient navigation (PN) as a means to improve cancer care quality and reduce cancer-related disparities, there are few well-designed controlled trials assessing the impact of PN on patient outcomes like satisfaction with care. The present controlled study examined effect of PN on satisfaction with cancer-related care. Patients who presented with a symptom or abnormal screening test (n = 1788) or definitive diagnosis (n = 445) of breast, cervical, colorectal, or prostate cancer from eight Patient Navigator Research Program sites were included in one of two groups: intervention (PN) or comparison (usual care or usual care plus cancer educational materials). Trained patient navigators met with intervention group participants to help them assess and identify resources to address barriers to cancer diagnostic or treatment care. Using a validated instrument, we assessed participants' satisfaction with their cancer diagnostic or treatment care up to 3 months after diagnostic resolution of a cancer-related abnormality or within 3 months of initiation of cancer treatment. Overall, patients reported high satisfaction with diagnostic care and cancer treatment. There were no statistically significant differences between PN and control groups in satisfaction with cancer-related care (p > 0.05). Hispanic and African American participants were less likely to report high satisfaction with cancer care when compared to White patients. Middle-aged participants with higher education, higher household income, private insurance, owning their own home, working full-time, and those whose primary language is English had higher satisfaction with cancer-related diagnostic care. PN had no statistically significant effect on patients' satisfaction with cancer-related care. Further research is needed to define the patient populations who might benefit from PN, content of PN that is most useful, and services that might enhance PN. clinicaltrials.gov identifiers: NCT00613275 , NCT00496678 , NCT00375024 , NCT01569672.

Evaluation of the Effect of Perceived Social Support on Promoting Self-Care Behaviors of Heart Failure Patients Referred to The Cardiovascular Research Center of Isfahan

PubMed Central

Khaledi, Gholam Hassan; Mostafavi, Firoozeh; Eslami, Ahmad Ali; Rooh Afza, Hamidreza; Mostafavi, Firoozeh; Akbar, Hassanzadeh

2015-01-01

Background: Self-care is one of the most important aspects of treatment in patients with heart failure and ranks among the most important coping strategies against the events and stresses of life. Perceived social support plays an important role in performing self-care behaviors in these patients. Objectives: This study was conducted to evaluate the effect of perceived social support on promoting self-care behaviors among heart failure patients. Patients and Methods: This educational intervention with a randomized control group was performed on 64 heart failure patients referred to The Cardiovascular Research Center of Isfahan. The study population was divided randomly into two groups of intervention and control. The indicators of self-care behavior and perceived social support (before, immediately after, and 2 months after the intervention) were completed by the two groups. The intervention group received educational interventions in 120-minute sessions once a week for 4 weeks. SPSS software (version 20) was used for data analysis in addition to methods of descriptive and inferential statistics. Results: Based on the obtained results, educational intervention was effective in the improvement of perceived social support among our heart failure patients. The results also showed that an increase in perceived social support significantly promoted self-care behaviors in the case group after the intervention compared with the control group (P < 0.001). Conclusions: Perceived social support played an important role in improving the performance of self-care behaviors in our heart failure patients. Given the strengths of the present study, these findings can be considered in future research in this domain. PMID:26328063

Interaction of healthcare worker hands and portable medical equipment: a sequence analysis to show potential transmission opportunities.

PubMed

Jinadatha, Chetan; Villamaria, Frank C; Coppin, John D; Dale, Charles R; Williams, Marjory D; Whitworth, Ryan; Stibich, Mark

2017-12-28

While research has demonstrated the importance of a clean health care environment, there is a lack of research on the role portable medical equipment (PME) play in the transmission cycle of healthcare-acquired infections (HAIs). This study investigated the patterns and sequence of contact events among health care workers, patients, surfaces, and medical equipment in a hospital environment. Research staff observed patient care events over six different 24 h periods on six different hospital units. Each encounter was recorded as a sequence of events and analyzed using sequence analysis and visually represented by network plots. In addition, a point prevalence microbial sample was taken from the computer on wheels (COW). The most touched items during patient care was the individual patient (850), bedrail (375), bed-surface (302), and bed side Table (223). Three of the top ten most common subsequences included touching PME and the patient: computer on wheels ➔ patient (62 of 274 total sequences, 22.6%, contained this sequence), patient ➔ COW (20.4%), and patient ➔ IV pump (16.1%). The network plots revealed large interconnectedness among objects in the room, the patient, PME, and the healthcare worker. Our results demonstrated that PME such as COW and IV pump were two of the most highly-touched items during patient care. Even with proper hand sanitization and personal protective equipment, this sequence analysis reveals the potential for contamination from the patient and environment, to a vector such as portable medical equipment, and ultimately to another patient in the hospital.

Ethical Challenges and Solutions Regarding Delirium Studies in Palliative Care

PubMed Central

Sweet, Lisa; Adamis, Dimitrios; Meagher, David; Davis, Daniel; Currow, David; Bush, Shirley H.; Barnes, Christopher; Hartwick, Michael; Agar, Meera; Simon, Jessica; Breitbart, William; MacDonald, Neil; Lawlor, Peter G.

2014-01-01

Context Delirium occurs commonly in settings of palliative care (PC), in which patient vulnerability in the unique context of end-of-life care and delirium-associated impairment of decision-making capacity may together present many ethical challenges. Objectives Based on deliberations at the Studies to Understand Delirium in Palliative Care Settings (SUNDIPS) meeting and an associated literature review, this article discusses ethical issues central to the conduct of research on delirious PC patients. Methods Together with an analysis of the ethical deliberations at the SUNDIPS meeting, we conducted a narrative literature review by key words searching of relevant databases and a subsequent hand search of initially identified articles. We also reviewed statements of relevance to delirium research in major national and international ethics guidelines. Results Key issues identified include the inclusion of PC patients in delirium research, capacity determination, and the mandate to respect patient autonomy and ensure maintenance of patient dignity. Proposed solutions include designing informed consent statements that are clear, concise, and free of complex phraseology; use of concise, yet accurate, capacity assessment instruments with a minimally burdensome schedule; and use of PC friendly consent models, such as facilitated, deferred, experienced, advance, and proxy models. Conclusion Delirium research in PC patients must meet the common standards for such research in any setting. Certain features unique to PC establish a need for extra diligence in meeting these standards and the employment of assessments, consent procedures, and patient-family interactions that are clearly grounded on the tenets of PC. PMID:24388124

Mapping the impact of patient and public involvement on health and social care research: a systematic review.

PubMed

Brett, Jo; Staniszewska, Sophie; Mockford, Carole; Herron-Marx, Sandra; Hughes, John; Tysall, Colin; Suleman, Rashida

2014-10-01

There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research. To identify the impact of patient and public involvement on health and social care research. A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon-Woods et al. (2005) checklist. All study types that reported the impact PPI had on the health and/or social care research study. A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user-focused research objectives, development of user-relevant research questions, development of user-friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer-focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified. This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade. © 2012 John Wiley & Sons Ltd.

Point-of-Care Ultrasound: A Trend in Health Care.

PubMed

Buerger, Anita M; Clark, Kevin R

2017-11-01

To discuss the current and growing use of point-of-care (POC) ultrasound in the management and care of patients. Several electronic research databases were searched to find articles that emphasized the use of POC ultrasound by health care providers who manage and treat critically ill or injured patients. Thirty-five relevant peer-reviewed journal articles were selected for this literature review. Common themes identified in the literature included the use of POC ultrasound in emergency medicine, military medicine, and remote care; comparison of POC ultrasound to other medical imaging modalities; investigation of the education and training required for nonimaging health care professionals who perform POC ultrasound in their practices; and discussion of the financial implications and limitations of POC ultrasound. POC ultrasound provides clinicians with real-time information to better manage and treat critically ill or injured patients in emergency medicine, military medicine, and remote care. In addition to providing immediate bedside diagnostic information, use of POC ultrasound has increased because of concerns regarding radiation protection. Finally, the expansion of POC ultrasound to other specialty areas requires nonimaging health care professionals to perform bedside ultrasound examinations and interpret the resulting images. Because POC ultrasound is user-dependent, adequate training is essential for all who perform and interpret the examinations. Research involving POC ultrasound will continue as innovations and confidence in ultrasound applications advance. Future research should continue to examine the broad use of POC ultrasound in patient care and management. ©2017 American Society of Radiologic Technologists.

"I'm not trying to be cured, so there's not much he can do for me": hospice patients' constructions of hospice's holistic care approach in a biomedical culture.

PubMed

Pederson, Sarah Nebel; Emmers-Sommer, Tara M

2012-01-01

The hospice philosophy was founded on a mission to provide comprehensive and holistic services to individuals at the end of life. Hospice interdisciplinary teams work together to offer therapies such as spiritual services, comfort care, and massage therapy to meet patients' physical, psychological, emotional, and spiritual needs. Although the hospice philosophy is guided toward patient-centered care, limited research has examined how patients understand holistic care services. Through a social constructionist lens and qualitative interviews, we examined hospice patients' understandings of holistic care and argue that these perceptions of care are constructed through the biomedical model of medicine.

A Study to Determine Military Office Manpower at WRAMC (Walter-Reed Army Medical Center) that is Diverted from Patient Care

DTIC Science & Technology

1986-01-01

related groups (DRG) with weighted "pass throughs" (i.e., training, research, consulting, etc.), these studies may enable Health 3 Services Command to...proposed military equivalent to diagnostic related groups (DRG). 45 FOOTNOTES 1U.S. Department of the Army, Health Care Studies and Clinical Investigation...performed by patient care providers within the military health care system is limited to activities that are directly related to patient care.1 The

Use of multiple methods to determine factors affecting quality of care of patients with diabetes.

PubMed

Khunti, K

1999-10-01

The process of care of patients with diabetes is complex; however, GPs are playing a greater role in its management. Despite the research evidence, the quality of care of patients with diabetes is variable. In order to improve care, information is required on the obstacles faced by practices in improving care. Qualitative and quantitative methods can be used for formation of hypotheses and the development of survey procedures. However, to date few examples exist in general practice research on the use of multiple methods using both quantitative and qualitative techniques for hypothesis generation. We aimed to determine information on all factors that may be associated with delivery of care to patients with diabetes. Factors for consideration on delivery of diabetes care were generated by multiple qualitative methods including brainstorming with health professionals and patients, a focus group and interviews with key informants which included GPs and practice nurses. Audit data showing variations in care of patients with diabetes were used to stimulate the brainstorming session. A systematic literature search focusing on quality of care of patients with diabetes in primary care was also conducted. Fifty-four potential factors were identified by multiple methods. Twenty (37.0%) were practice-related factors, 14 (25.9%) were patient-related factors and 20 (37.0%) were organizational factors. A combination of brainstorming and the literature review identified 51 (94.4%) factors. Patients did not identify factors in addition to those identified by other methods. The complexity of delivery of care to patients with diabetes is reflected in the large number of potential factors identified in this study. This study shows the feasibility of using multiple methods for hypothesis generation. Each evaluation method provided unique data which could not otherwise be easily obtained. This study highlights a way of combining various traditional methods in an attempt to overcome the deficiencies and bias that may occur when using a single method. Similar methods can also be used to generate hypotheses for other exploratory research. An important responsibility of health authorities and primary care groups will be to assess the health needs of their local populations. Multiple methods could also be used to identify and commission services to meet these needs.

The Role of the Built Environment: How Decentralized Nurse Stations Shape Communication, Patient Care Processes, and Patient Outcomes.

PubMed

Real, Kevin; Bardach, Shoshana H; Bardach, David R

2017-12-01

Increasingly, health communication scholars are attending to how hospital built environments shape communication, patient care processes, and patient outcomes. This multimethod study was conducted on two floors of a newly designed urban hospital. Nine focus groups interviews were conducted with 35 health care professionals from 10 provider groups. Seven of the groups were homogeneous by profession or level: nursing (three groups), nurse managers (two groups), and one group each of nurse care technicians ("techs") and physicians. Two mixed groups were comprised of staff from pharmacy, occupational therapy, patient care facilitators, physical therapy, social work, and pastoral care. Systematic qualitative analysis was conducted using a conceptual framework based on systems theory and prior health care design and communication research. Additionally, quantitative modeling was employed to assess walking distances in two different hospital designs. Results indicate nurses walked significantly more in the new hospital environment. Qualitative analysis revealed three insights developed in relationship to system structures, processes, and outcomes. First, decentralized nurse stations changed system interdependencies by reducing nurse-to-nurse interactions and teamwork while heightening nurse interdependencies and teamwork with other health care occupations. Second, many nursing-related processes remained centralized while nurse stations were decentralized, creating systems-based problems for nursing care. Third, nursing communities of practices were adversely affected by the new design. Implications of this study suggest that nurse station design shapes communication, patient care processes, and patient outcomes. Further, it is important to understand how the built environment, often treated as invisible in communication research, is crucial to understanding communication within complex health care systems.

Priorities in pediatric epilepsy research

PubMed Central

Baca, Christine B.; Loddenkemper, Tobias; Vickrey, Barbara G.; Dlugos, Dennis

2013-01-01

The Priorities in Pediatric Epilepsy Research workshop was held in the spirit of patient-centered and patient-driven mandates for developing best practices in care, particularly for epilepsy beginning under age 3 years. The workshop brought together parents, representatives of voluntary advocacy organizations, physicians, allied health professionals, researchers, and administrators to identify priority areas for pediatric epilepsy care and research including implementation and testing of interventions designed to improve care processes and outcomes. Priorities highlighted were 1) patient outcomes, especially seizure control but also behavioral, academic, and social functioning; 2) early and accurate diagnosis and optimal treatment; 3) role and involvement of parents (communication and shared decision-making); and 4) integration of school and community organizations with epilepsy care delivery. Key factors influencing pediatric epilepsy care included the child's impairments and seizure presentation, parents, providers, the health care system, and community systems. Care was represented as a sequential process from initial onset of seizures to referral for comprehensive evaluation when needed. We considered an alternative model in which comprehensive care would be utilized from onset, proactively, rather than reactively after pharmacoresistance became obvious. Barriers, including limited levels of evidence about many aspects of diagnosis and management, access to care—particularly epilepsy specialty and behavioral health care—and implementation, were identified. Progress hinges on coordinated research efforts that systematically address gaps in knowledge and overcoming barriers to access and implementation. The stakes are considerable, and the potential benefits for reduced burden of refractory epilepsy and lifelong disabilities may be enormous. PMID:23966254

NIH Roundtable on Opportunities to Advance Research on Neurologic and Psychiatric Emergencies.

PubMed

D'Onofrio, Gail; Jauch, Edward; Jagoda, Andrew; Allen, Michael H; Anglin, Deirdre; Barsan, William G; Berger, Rachel P; Bobrow, Bentley J; Boudreaux, Edwin D; Bushnell, Cheryl; Chan, Yu-Feng; Currier, Glenn; Eggly, Susan; Ichord, Rebecca; Larkin, Gregory L; Laskowitz, Daniel; Neumar, Robert W; Newman-Toker, David E; Quinn, James; Shear, Katherine; Todd, Knox H; Zatzick, Douglas

2010-11-01

The Institute of Medicine Committee on the Future of Emergency Care in the United States Health System (2003) identified a need to enhance the research base for emergency care. As a result, a National Institutes of Health (NIH) Task Force on Research in Emergency Medicine was formed to enhance NIH support for emergency care research. Members of the NIH Task Force and academic leaders in emergency care participated in 3 Roundtable discussions to prioritize current opportunities for enhancing and conducting emergency care research. We identify key research questions essential to advancing the science of emergency care and discuss the barriers and strategies to advance research by exploring the collaboration between NIH and the emergency care community. Experts from emergency medicine, neurology, psychiatry, and public health assembled to review critical areas in need of investigation, current gaps in knowledge, barriers, and opportunities. Neurologic emergencies included cerebral resuscitation, pain, stroke, syncope, traumatic brain injury, and pregnancy. Mental health topics included suicide, agitation and delirium, substances, posttraumatic stress, violence, and bereavement. Presentations and group discussion firmly established the need for translational research to bring basic science concepts into the clinical arena. A coordinated continuum of the health care system that ensures rapid identification and stabilization and extends through discharge is necessary to maximize overall patient outcomes. There is a paucity of well-designed, focused research on diagnostic testing, clinical decisionmaking, and treatments in the emergency setting. Barriers include the limited number of experienced researchers in emergency medicine, limited dedicated research funding, and difficulties of conducting research in chaotic emergency environments stressed by crowding and limited resources. Several themes emerged during the course of the roundtable discussion, including the need for development of (1) a research infrastructure for the rapid identification, consent, and tracking of research subjects that incorporates innovative informatics technologies, essential for future research; (2) diagnostic strategies and tools necessary to understand key populations and the process of medical decisionmaking, including the investigation of the pathobiology of symptoms and symptom-oriented therapies; (3) collaborative research networks to provide unique opportunities to form partnerships, leverage patient cohorts and clinical and financial resources, and share data; (4) formal research training programs integral for creating new knowledge and advancing the science and practice of emergency medicine; and (5) recognition that emergency care is part of an integrated system from emergency medical services dispatch to discharge. The NIH Roundtable "Opportunities to Advance Research on Neurological and Psychiatric Emergencies" created a framework to guide future emergency medicine-based research initiatives. Emergency departments provide the portal of access to the health care system for most patients with acute neurologic and psychiatric illness. Emergency physicians and colleagues are primed to investigate neurologic and psychiatric emergencies that will directly improve the delivery of care and patient outcomes. Copyright © 2010. Published by Mosby, Inc.

Staff perception of patient discharge from ICU to ward-based care.

PubMed

James, Stephen; Quirke, Sara; McBride-Henry, Karen

2013-11-01

The quality of information exchange between intensive care unit (ICU) and ward nurses, when patients are transferred out of intensive care, is important to the continuity of safe care. This research aimed to explore nurses' experiences of the discharge process from ICU to the ward environment. The study was conducted in a New Zealand Metropolitan hospital, using an exploratory descriptive design we adapted a questionnaire based on Whittaker and Ball's research on ICU patient handover. The questionnaires were then analysed using a descriptive thematic approach. The response rate of 48% included 45 ICU and 47 ward nurses. Key findings were that the written and verbal communication needs differ dependent upon setting and the timing of a discharge. Timing of handover also requires negotiation. Being able to negotiate the timing and nature of handover is important for nurses. In addition, standardized approaches to communication are believed to enhance patient safety. Standardized handover, with content and processes that are mutually negotiated, is crucial to providing the safest environment for patients. © 2013 The Authors. Nursing in Critical Care © 2013 British Association of Critical Care Nurses.

Qualitative analysis of clinical research coordinators' role in phase I cancer clinical trials.

PubMed

Fujiwara, Noriko; Ochiai, Ryota; Shirai, Yuki; Saito, Yuko; Nagamura, Fumitaka; Iwase, Satoru; Kazuma, Keiko

2017-12-01

Clinical research coordinators play a pivotal role in phase I cancer clinical trials. We clarified the care coordination and practice for patients provided by clinical research coordinators in phase I cancer clinical trials in Japan and elucidated clinical research coordinators' perspective on patients' expectations and understanding of these trials. Fifteen clinical research coordinators participated in semi-structured interviews regarding clinical practices; perceptions of patients' expectations; and the challenges that occur before, during, and after phase I cancer clinical trials. Qualitative content analysis showed that most clinical research coordinators observed that patients have high expectations from the trials. Most listened to patients to confirm patients' understanding and reflected on responses to maintain hope, but to avoid excessive expectations; clinical research coordinators considered avoiding unplanned endings; and they aimed to establish good relationships between patients, medical staff, and among the professional team. Clinical research coordinators were insightful about the needs of patients and took a meticulous approach to the phase I cancer clinical trial process, allowing time to connect with patients and to coordinate the inter-professional research team. Additionally, education in advanced oncology care was valuable for comforting participants in cancer clinical trials.

Direct observation of weight-related communication in primary care: a systematic review.

PubMed

McHale, Calum T; Laidlaw, Anita H; Cecil, Joanne E

2016-08-01

Primary care is ideally placed to play an effective role in patient weight management; however, patient weight is seldom discussed in this context. A synthesis of studies that directly observe weight discussion in primary care is required to more comprehensively understand and improve primary care weight-related communication. To systematically identify and examine primary care observational research that investigates weight-related communication and its relationship to patient weight outcomes. A systematic review of literature published up to August 2015, using seven electronic databases (including MEDLINE, Scopus and PsycINFO), was conducted using search terms such as overweight, obese and/or doctor-patient communication. Twenty papers were included in the final review. Communication analysis focused predominantly on 'practitioner' use of specific patient-centred communication. Practitioner use of motivational interviewing was associated with improved patient weight-related outcomes, including patient weight loss and increased patient readiness to lose weight; however, few studies measured patient weight-related outcomes. Studies directly observing weight-related communication in primary care are scarce and limited by a lack of focus on patient communication and patient weight-related outcomes. Future research should measure practitioner and patient communications during weight discussion and their impact on patient weight-related outcomes. This knowledge may inform the development of a communication intervention to assist practitioners to more effectively discuss weight with their overweight and/or obese patients. © The Author 2016. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Gaps in Provision of Primary and Specialty Palliative Care in the Acute Care Setting by Race and Ethnicity.

PubMed

Chuang, Elizabeth; Hope, Aluko A; Allyn, Katherine; Szalkiewicz, Elissa; Gary, Brittany; Gong, Michelle N

2017-11-01

Previous research has identified a large unmet need in provision of specialist-level palliative care services in the hospital. How much of this gap is filled by primary palliative care provided by generalists or nonpalliative specialists has not been quantified. Estimates of racial and ethnic disparities have been inconsistent. The objective of this study was to 1) estimate primary and specialty palliative care delivery and to measure unmet needs in the inpatient setting and 2) explore racial and ethnic disparities in palliative care delivery. This was a cross-sectional, retrospective study of 55,658 adult admissions to two acute care hospitals in the Bronx in 2013. Patients with palliative care needs were identified by criteria adapted from the literature. The primary outcomes were delivery of primary and specialist-level palliative care. In all, 18.5% of admissions met criteria for needing palliative care. Of those, 18% received specialist-level palliative care, an estimated 30% received primary palliative care, and 37% had no evidence of palliative care or advance care planning. Black and Hispanic patients were not less likely to receive specialist-level palliative care (adjusted odds ratio [OR] black patients = 1.18, 95% CI 0.98, 1.42; adjusted OR Hispanic patients = 1.24, 95% CI 1.04, 1.48), but they were less likely to receive primary palliative care (adjusted OR black patients = 0.41, 95% CI 0.20, 0.84; adjusted OR Hispanic patients = 0.48, 95% CI 0.25, 0.94). Even when considering primary and specialty palliative care, hospitalized patients have a high prevalence of unmet palliative care need. Further research is needed understand racial and ethnic disparities in palliative care delivery. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Training Providers and Patients to Talk about End-of-Life Care

Cancer.gov

Failing to discuss the transition from active cancer treatment to end-of-life care can leave doctors unsure of what a patient truly wants. Failing to receive end-of-life care in line with their values and wishes can cause patients and their families great distress. Researchers have developed innovative, evidence-based programs to help doctors and patients improve their communication skills and grow comfortable with these discussions.

The Selection of Death Place Among Patients Receiving Hospital-Based Palliative Care Service in Taiwan.

PubMed

Ho, Ching-Sung

2018-05-01

To analyze the selection of a place to die and its related factors in patients who received hospice shared care service in Taiwan. This study included patients who received hospice shared care service in a metropolitan hospital as the research participants. A total of 172 questionnaires were collected, and 146 of them were used as valid samples for analysis. This study applied the multivariate logistic regression analysis to assess the significance of independent variables associated with the selection of place of death. The results revealed that 52.6% of the patients select hospital as the place to end their life, while 43.8% of them select their home as the place of death. Furthermore, younger adult patients (<65), those who with a higher educational level (≥10 years), and those with a clear cognizance of the disease progression tended to select hospital as the place to spend their last days. The research disclosed that more patients with the hospice shared care service prefer hospital to their home as the place to die. In order to provide end-of-life care for patients with low cost and appropriate treatment, it is important to understand the related sociodemographic factors and the need of the patients to provide well-designed hospice/specialist palliative care regimen.

Patients' expectations of osteopathic care: a qualitative study.

PubMed

Cross, Vinette; Leach, C M Janine; Fawkes, Carol A; Moore, Ann P

2015-10-01

Research has shown that patients' expectations of health care and health-care practitioners are complex and may have a significant impact on outcomes of care. Little is known about the expectations of osteopathic patients. To explore osteopathic patients' expectations of private sector care. Focus groups and individual interviews with purposively selected patients; this was the qualitative phase of a mixed methods study, the final phase being a patient survey. A total of 34 adult patients currently attending for treatment at private osteopathic practices across the United Kingdom. Focus group discussions and individual interviews around expectations before, during and after osteopathic care. Thematic analysis of text data to identify topics raised by patients and to group these into broad themes. Many components of expectation were identified. A preliminary conceptual framework describing the way the therapeutic encounter is approached in osteopathy comprised five themes: individual agency, professional expertise, customer experience, therapeutic process and interpersonal relationship. The components of expectation identified in this phase of the study provided potential question topics for the survey questionnaire in the subsequent phase of the investigation. The model developed in this study may add a new perspective to existing evidence on expectations. Further research is recommended to test the findings both within private practice and the National Health Service. © 2013 John Wiley & Sons Ltd.

Cancer Care Delivery and Women's Health: The Role of Patient Navigation.

PubMed

Krok-Schoen, Jessica L; Oliveri, Jill M; Paskett, Electra D

2016-01-01

Patient navigation (PN) is a patient-centered health-care service delivery model that assists individuals, particularly the medically underserved, in overcoming barriers (e.g., personal, logistical, and system) to care across the cancer care continuum. In 2012, the American College of Surgeons Commission on Cancer (CoC) announced that health-care facilities seeking CoC-accreditation must have PN processes in place starting January 1, 2015. The CoC mandate, in light of the recent findings from centers within the Patient Navigation Research Program and the influx of PN interventions, warrants the present literature review. PubMed and Medline were searched for studies published from January 2010 to October 2015, particularly those recent articles within the past 2 years, addressing PN for breast and gynecological cancers, and written in English. Search terms included patient navigation, navigation, navigator, cancer screening, clinical trials, cancer patient, cancer survivor, breast cancer, gynecological cancer, ovarian cancer, uterine cancer, vaginal cancer, and vulvar cancer. Consistent with prior reviews, PN was shown to be effective in helping women who receive cancer screenings, receive more timely diagnostic resolution after a breast and cervical cancer screening abnormality, initiate treatment sooner, receive proper treatment, and improve quality of life after cancer diagnosis. However, several limitations were observed. The majority of PN interventions focused on cancer screening and diagnostic resolution for breast cancer. As observed in prior reviews, methodological rigor (e.g., randomized controlled trial design) was lacking. Future research opportunities include testing PN interventions in the post-treatment settings and among gynecological cancer patient populations, age-related barriers to effective PN, and collaborative efforts between community health workers and patient navigators as care goes across segments of the cancer control continuum. As PN programs continue to develop and become a standard of care, further research will be required to determine the effectiveness of cancer PN across the cancer care continuum, and in different patient populations.

Care coordination between convenient care clinics and healthcare homes.

PubMed

Carney Moore, Jeanne Marie; Dolansky, Mary; Hudak, Christine; Kenneley, Irena

2015-05-01

Patient care coordination is foundational to high-quality health care and is a national priority. Since its inception, convenient health care has been criticized for its potential to decrease patient care coordination. The purpose of this study is to investigate care coordination between convenient care clinics and healthcare homes. The care coordination practices of Minute Clinic, which represents over 40% of the convenient care industry, were studied. Patient identification of healthcare homes and consent to transmit visit records were abstracted from the health records of 1,014,249 patients dated July 1 to December 31, 2012. The completeness of record content and timeliness of record transmission were assessed by means of interviewing Minute Clinic's Director of Quality and reviewing patient electronic health records. Minute Clinic attempts to coordinate care with healthcare homes, but opportunities for improved care coordination exist. Increased vigilance on the part of providers, patients, and healthcare systems is needed to mitigate barriers to care coordination. Future research is needed to examine care coordination from multiple convenient care operators and explore how to increase care coordination with healthcare homes. ©2014 American Association of Nurse Practitioners.

Comparison of Nurse Staffing Measurements in Staffing-Outcomes Research.

PubMed

Park, Shin Hye; Blegen, Mary A; Spetz, Joanne; Chapman, Susan A; De Groot, Holly A

2015-01-01

Investigators have used a variety of operational definitions of nursing hours of care in measuring nurse staffing for health services research. However, little is known about which approach is best for nurse staffing measurement. To examine whether various nursing hours measures yield different model estimations when predicting patient outcomes and to determine the best method to measure nurse staffing based on the model estimations. We analyzed data from the University HealthSystem Consortium for 2005. The sample comprised 208 hospital-quarter observations from 54 hospitals, representing information on 971 adult-care units and about 1 million inpatient discharges. We compared regression models using different combinations of staffing measures based on productive/nonproductive and direct-care/indirect-care hours. Akaike Information Criterion and Bayesian Information Criterion were used in the assessment of staffing measure performance. The models that included the staffing measure calculated from productive hours by direct-care providers were best, in general. However, the Akaike Information Criterion and Bayesian Information Criterion differences between models were small, indicating that distinguishing nonproductive and indirect-care hours from productive direct-care hours does not substantially affect the approximation of the relationship between nurse staffing and patient outcomes. This study is the first to explicitly evaluate various measures of nurse staffing. Productive hours by direct-care providers are the strongest measure related to patient outcomes and thus should be preferred in research on nurse staffing and patient outcomes.

A computer-based education intervention to enhance surrogates' informed consent for genomics research.

PubMed

Shelton, Ann K; Freeman, Bradley D; Fish, Anne F; Bachman, Jean A; Richardson, Lloyd I

2015-03-01

Many research studies conducted today in critical care have a genomics component. Patients' surrogates asked to authorize participation in genomics research for a loved one in the intensive care unit may not be prepared to make informed decisions about a patient's participation in the research. To examine the effectiveness of a new, computer-based education module on surrogates' understanding of the process of informed consent for genomics research. A pilot study was conducted with visitors in the waiting rooms of 2 intensive care units in a Midwestern tertiary care medical center. Visitors were randomly assigned to the experimental (education module plus a sample genomics consent form; n = 65) or the control (sample genomics consent form only; n = 69) group. Participants later completed a test on informed genomics consent. Understanding the process of informed consent was greater (P = .001) in the experimental group than in the control group. Specifically, compared with the control group, the experimental group had a greater understanding of 8 of 13 elements of informed consent: intended benefits of research (P = .02), definition of surrogate consenter (P= .001), withdrawal from the study (P = .001), explanation of risk (P = .002), purpose of the institutional review board (P = .001), definition of substituted judgment (P = .03), compensation for harm (P = .001), and alternative treatments (P = .004). Computer-based education modules may be an important addition to conventional approaches for obtaining informed consent in the intensive care unit. Preparing patients' family members who may consider serving as surrogate consenters is critical to facilitating genomics research in critical care. ©2015 American Association of Critical-Care Nurses.

Patient Turnover: A Concept Analysis.

PubMed

VanFosson, Christopher A; Yoder, Linda H; Jones, Terry L

Patient turnover influences the quality and safety of patient care. However, variations in the conceptual underpinnings of patient turnover limit the understanding of the phenomenon. A concept analysis was completed to clarify the role of patient turnover in relation to outcomes in the acute care hospital setting. The defining attributes, antecedents, consequences, and empirical referents of patient turnover were proposed. Nursing leaders should account for patient turnover in workload and staffing calculations. Further research is needed to clarify the influence of patient turnover on the quality and safety of nursing care using a unified understanding of the phenomenon.

Patients' rights in a technology and market driven-Europe.

PubMed

Abbing, Henriette D C Roscam

2010-03-01

This article deals with the impact on patients' rights of medical and technological advances in a market oriented (European) society: what are the advantages and risks, what are the challenges that lay ahead of us? After introducing the subject matter, the first part deals with risks for patients' rights in the European cross border context (health care, direct to the public screening offers and biomedical research). The second part sketches some of the implications of innovation in health care and medical technology for patients' rights to autonomy and private life, particularly when third party interests are involved. The article ends with some suggestions on how best to protect patients' rights in the perspective of innovation in health care and medical research.

Introducing a model incorporating early integration of specialist palliative care: A qualitative research study of staff's perspectives.

PubMed

Michael, Natasha; O'Callaghan, Clare; Brooker, Joanne E; Walker, Helen; Hiscock, Richard; Phillips, David

2016-03-01

Palliative care has evolved to encompass early integration, with evaluation of patient and organisational outcomes. However, little is known of staff's experiences and adaptations when change occurs within palliative care services. To explore staff experiences of a transition from a service predominantly focused on end-of-life care to a specialist service encompassing early integration. Qualitative research incorporating interviews, focus groups and anonymous semi-structured questionnaires. Data were analysed using a comparative approach. Service activity data were also aggregated. A total of 32 medical, nursing, allied health and administrative staff serving a 22-bed palliative care unit and community palliative service, within a large health service. Patients cared for within the new model were significantly more likely to be discharged home (7.9% increase, p = 0.003) and less likely to die in the inpatient unit (10.4% decrease, p < 0.001). While early symptom management was considered valuable, nurses particularly found additional skill expectations challenging, and perceived patients' acute care needs as detracting from emotional and end-of-life care demands. Staff views varied on whether they regarded the new model's faster-paced work-life as consistent with fundamental palliative care principles. Less certainty about care goals, needing to prioritise care tasks, reduced shared support rituals and other losses could intensify stress, leading staff to develop personalised coping strategies. Services introducing and researching innovative models of palliative care need to ensure adequate preparation, maintenance of holistic care principles in faster work-paced contexts and assist staff dealing with demands associated with caring for patients at different stages of illness trajectories. © The Author(s) 2015.

Identification and Management of Information Problems by Emergency Department Staff

PubMed Central

Murphy, Alison R.; Reddy, Madhu C.

2014-01-01

Patient-care teams frequently encounter information problems during their daily activities. These information problems include wrong, outdated, conflicting, incomplete, or missing information. Information problems can negatively impact the patient-care workflow, lead to misunderstandings about patient information, and potentially lead to medical errors. Existing research focuses on understanding the cause of these information problems and the impact that they can have on the hospital’s workflow. However, there is limited research on how patient-care teams currently identify and manage information problems that they encounter during their work. Through qualitative observations and interviews in an emergency department (ED), we identified the types of information problems encountered by ED staff, and examined how they identified and managed the information problems. We also discuss the impact that these information problems can have on the patient-care teams, including the cascading effects of information problems on workflow and the ambiguous accountability for fixing information problems within collaborative teams. PMID:25954457

Defining Priorities to Improve Patient Experience in Non-Muscle Invasive Bladder Cancer.

PubMed

Garg, Tullika; Connors, Jill Nault; Ladd, Ilene G; Bogaczyk, Tyler L; Larson, Sharon L

2018-01-20

Although approximately 75% of bladder cancers are non-muscle invasive (NMIBC) at diagnosis, most research tends to focus on invasive disease (e.g., experiences related to radical cystectomy and urinary diversion). There is a lack of studies on quality of life, and especially qualitative research, in bladder cancer generally. As a result, relatively little is known about the experiences and needs of NMIBC patients. To understand patient experience, define care priorities, and identify targets for care improvement in NMIBC across the cancer continuum. Through focus groups, patients treated for NMIBC (stage

Qualitative Research in Palliative Care: Applications to Clinical Trials Work.

PubMed

Lim, Christopher T; Tadmor, Avia; Fujisawa, Daisuke; MacDonald, James J; Gallagher, Emily R; Eusebio, Justin; Jackson, Vicki A; Temel, Jennifer S; Greer, Joseph A; Hagan, Teresa; Park, Elyse R

2017-08-01

While vast opportunities for using qualitative methods exist within palliative care research, few studies provide practical advice for researchers and clinicians as a roadmap to identify and utilize such opportunities. To provide palliative care clinicians and researchers descriptions of qualitative methodology applied to innovative research questions relative to palliative care research and define basic concepts in qualitative research. Body: We describe three qualitative projects as exemplars to describe major concepts in qualitative analysis of early palliative care: (1) a descriptive analysis of clinician documentation in the electronic health record, (2) a thematic content analysis of palliative care clinician focus groups, and (3) a framework analysis of audio-recorded encounters between patients and clinicians as part of a clinical trial. This study provides a foundation for undertaking qualitative research within palliative care and serves as a framework for use by other palliative care researchers interested in qualitative methodologies.

A study of clinical nursing research priorities in aged care: a Hong Kong perspective.

PubMed

Chang, Esther; Ho, Carey Kit Bing; Yuen, Anders Chi Man; Hatcher, Deborah

2003-10-01

The aim of this study was to identify clinical research priorities in aged care from the perspectives of rehabilitation aged care nurses in Hong Kong. The Delphi method was used whereby 33 registered nurses working in an aged care rehabilitation ward identified 28 research questions pertaining to areas in which nurses could take a leadership role: clinical research that is of highest value to patients and nurse specialists; clinical research which would provide improved community care; facilitate health promotion and disease prevention and be of value to the professional needs of clinical nurses. Study findings have implications and provide direction for clinical nursing research in aged care.

The views of patients with brain cancer about palliative care: a qualitative study.

PubMed

Vierhout, M; Daniels, M; Mazzotta, P; Vlahos, J; Mason, W P; Bernstein, M

2017-12-01

Palliative care, a specialty aimed at providing optimal care to patients with life-limiting and chronic conditions, has several benefits. Although palliative care is appropriate for neurosurgical conditions, including brain cancer, few studies have examined the views of brain cancer patients about palliative care. We aimed to explore the thoughts of brain cancer patients about palliative care, their opinions about early palliative care, and their preferred care setting. Semi-structured interviews and the qualitative research methodologies of grounded theory were used to explore perceptions of palliative care on the part of 39 brain cancer outpatients. Seven overarching actions emerged: ■Patients would prefer to receive palliative care in the home.■Increased time with caregivers and family are the main appeals of home care.■Patients express dissatisfaction with brief and superficial interactions with health care providers.■Patients believe that palliative care can contribute to their emotional well-being.■Patients are open to palliative care if they believe that it will not diminish optimism.■There is a preconceived idea that palliative care is directly linked to active dying, and that supposed link generates fear in some patients.■Patients prefer to be educated about palliative care as an option early in their illness, even if they are fearful of it. Overall, when educated about the true meaning of palliative care, most patients express interest in accessing palliative care services. Although the level of fear concerning palliative care varies in patients, most recognize the associated benefits.

Development of a chronic kidney disease patient navigator program.

PubMed

Jolly, Stacey E; Navaneethan, Sankar D; Schold, Jesse D; Arrigain, Susana; Konig, Victoria; Burrucker, Yvette K; Hyland, Jennifer; Dann, Priscilla; Tucky, Barbara H; Sharp, John W; Nally, Joseph V

2015-05-03

Chronic Kidney Disease (CKD) is a public health problem and there is a scarcity of type 2 CKD translational research that incorporates educational tools. Patient navigators have been shown to be effective at reducing disparities and improving outcomes in the oncology field. We describe the creation of a CKD Patient Navigator program designed to help coordinate care, address system-barriers, and educate/motivate patients. The conceptual framework for the CKD Patient Navigator Program is rooted in the Chronic Care Model that has a main goal of high-quality chronic disease management. Our established multidisciplinary CKD research team enlisted new members from information technology and data management to help create the program. It encompassed three phases: hiring, training, and implementation. For hiring, we wanted a non-medical or lay person with a college degree that possessed strong interpersonal skills and experience in a service-orientated field. For training, there were three key areas: general patient navigator training, CKD education, and electronic health record (EHR) training. For implementation, we defined barriers of care and created EHR templates for which pertinent study data could be extracted. We have hired two CKD patient navigators who will be responsible for navigating CKD patients enrolled in a clinical trial. They have undergone training in general patient navigation, specific CKD education through directed readings and clinical shadowing, as well as EHR and other patient related privacy and research training. The need for novel approaches like our CKD patient navigator program designed to impact CKD care is vital and should utilize team-based care and health information technology given the changing landscape of our health systems.

A guide to reading and using systematic reviews of qualitative research.

PubMed

Tong, Allison; Palmer, Suetonia; Craig, Jonathan C; Strippoli, Giovanni F M

2016-06-01

There is an increasingly widespread policy momentum to increase patient-centred care and to improve quality of life outcomes within health services. Qualitative research methods are used to elicit in-depth and detailed insights into people's attitudes, beliefs, emotions and experiences-much of which may remain unspoken during clinical encounters. Questions about patients' beliefs and preferences for treatment can be addressed by qualitative research and inform evidence-based strategies for delivering patient-centred care. Systematic reviews of multiple primary qualitative studies bring together findings from different studies to offer new and more comprehensive understandings of social phenomena across various healthcare contexts and populations and are an emerging methodology in the literature including for care in chronic kidney disease. This article will provide a framework for the systematic review of qualitative research so readers can make sense of these study types and use them in clinical care and policy. © The Author 2014. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.

Fostering a strategic alliance between patients' associations and health care professionals.

PubMed

Mosconi, Paola; Colombo, Cinzia

2010-01-01

The Laboratory for Medical Research and Consumer Involvement was established in 2005 at Mario Negri Institute, a nonprofit institute for pharmacological research, as a consequence of the increasing interest in boosting citizens' and patients' involvement in the health care debate. It has developed several projects with patients' associations, researchers, and clinicians. Its objectives are to foster a strategic alliance among health care professionals, patients, and their organizations, developing activities with different levels of involvement. Among the laboratory' s activities, the PartecipaSalute project has organized training courses for consumers, published a Web site disseminating evidence-based information and critical appraisal tools, and collected research priorities set by patients. Two consensus conferences have been organized, one dealing with brain injury patients' assistance and the other with hormone therapy and menopause. The quality of health information covered by different sources (press articles, Web sites, and brochures) has also been assessed. Seventy consumers attended the training courses from 2006 to 2008, and between January 2008 and June 2009 the PartecipaSalute Web site registered a mean of 30 500 single visits monthly. At the consensus conference Informing women on hormone replacement therapy, 7 members of the 14-member panel defining the final recommendations were lay people. Other data from the laboratory's main activities are given in this article. The criteria for selecting patients and their organizations, the methods of involvement, and evaluation of the impact of the activities are still open questions. We are now developing ways of evaluating our activities, and trying to boost citizens' and patients' participation in decisional settings, concerning health care assistance and research studies.

Enhancing mHealth Technology in the Patient-Centered Medical Home Environment to Activate Patients With Type 2 Diabetes: A Multisite Feasibility Study Protocol

PubMed Central

Shi, Lu; Williams, Joel E; Dye, Cheryl J; Chen, Liwei; Crawford, Paul; Shry, Eric A; Griffin, Sarah F; Jones, Karyn O; Sherrill, Windsor W; Truong, Khoa; Little, Jeanette R; Edwards, Karen W; Hing, Marie; Moss, Jennie B

2017-01-01

Background The potential of mHealth technologies in the care of patients with diabetes and other chronic conditions has captured the attention of clinicians and researchers. Efforts to date have incorporated a variety of tools and techniques, including Web-based portals, short message service (SMS) text messaging, remote collection of biometric data, electronic coaching, electronic-based health education, secure email communication between visits, and electronic collection of lifestyle and quality-of-life surveys. Each of these tools, used alone or in combination, have demonstrated varying degrees of effectiveness. Some of the more promising results have been demonstrated using regular collection of biometric devices, SMS text messaging, secure email communication with clinical teams, and regular reporting of quality-of-life variables. In this study, we seek to incorporate several of the most promising mHealth capabilities in a patient-centered medical home (PCMH) workflow. Objective We aim to address underlying technology needs and gaps related to the use of mHealth technology and the activation of patients living with type 2 diabetes. Stated differently, we enable supporting technologies while seeking to influence patient activation and self-care activities. Methods This is a multisite phased study, conducted within the US Military Health System, that includes a user-centered design phase and a PCMH-based feasibility trial. In phase 1, we will assess both patient and provider preferences regarding the enhancement of the enabling technology capabilities for type 2 diabetes chronic care management. Phase 2 research will be a single-blinded 12-month feasibility study that incorporates randomization principles. Phase 2 research will seek to improve patient activation and self-care activities through the use of the Mobile Health Care Environment with tailored behavioral messaging. The primary outcome measure is the Patient Activation Measure scores. Secondary outcome measures are Summary of Diabetes Self-care Activities Measure scores, clinical measures, comorbid conditions, health services resource consumption, and technology system usage statistics. Results We have completed phase 1 data collection. Formal analysis of phase 1 data has not been completed. We have obtained institutional review board approval and began phase 1 research in late fall 2016. Conclusions The study hypotheses suggest that patients can, and will, improve their activation in chronic care management. Improved activation should translate into improved diabetes self-care. Expected benefits of this research to the scientific community and health care services include improved understanding of how to leverage mHealth technology to activate patients living with type 2 diabetes in self-management behaviors. The research will shed light on implementation strategies in integrating mHealth into the clinical workflow of the PCMH setting. Trial Registration ClinicalTrials.gov NCT02949037. https://clinicaltrials.gov/ct2/show/NCT02949037. (Archived by WebCite at http://www.webcitation.org/6oRyDzqei) PMID:28264792

Removing Obstacles To Eliminating Racial And Ethnic Disparities In Behavioral Health Care.

PubMed

Alegría, Margarita; Alvarez, Kiara; Ishikawa, Rachel Zack; DiMarzio, Karissa; McPeck, Samantha

2016-06-01

Despite decades of research, racial and ethnic disparities in behavioral health care persist. The Affordable Care Act expanded access to behavioral health care, but many reform initiatives fail to consider research about racial/ethnic minorities. Mistaken assumptions that underlie the expansion of behavioral health care run the risk of replicating existing service disparities. Based on a review of relevant literature and numerous observational and field studies with minority populations, we identified the following three mistaken assumptions: Improvement in health care access alone will reduce disparities, current service planning addresses minority patients' preferences, and evidence-based interventions are readily available for diverse populations. We propose tailoring the provision of care to remove obstacles that minority patients face in accessing treatment, promoting innovative services that respond to patients' needs and preferences, and allowing flexibility in evidence-based practice and the expansion of the behavioral health workforce. These proposals should help meet the health care needs of a growing racial/ethnic minority population. Project HOPE—The People-to-People Health Foundation, Inc.

Standardized cardiovascular data for clinical research, registries, and patient care: a report from the Data Standards Workgroup of the National Cardiovascular Research Infrastructure project.

PubMed

Anderson, H Vernon; Weintraub, William S; Radford, Martha J; Kremers, Mark S; Roe, Matthew T; Shaw, Richard E; Pinchotti, Dana M; Tcheng, James E

2013-05-07

Relatively little attention has been focused on standardization of data exchange in clinical research studies and patient care activities. Both are usually managed locally using separate and generally incompatible data systems at individual hospitals or clinics. In the past decade there have been nascent efforts to create data standards for clinical research and patient care data, and to some extent these are helpful in providing a degree of uniformity. Nonetheless, these data standards generally have not been converted into accepted computer-based language structures that could permit reliable data exchange across computer networks. The National Cardiovascular Research Infrastructure (NCRI) project was initiated with a major objective of creating a model framework for standard data exchange in all clinical research, clinical registry, and patient care environments, including all electronic health records. The goal is complete syntactic and semantic interoperability. A Data Standards Workgroup was established to create or identify and then harmonize clinical definitions for a base set of standardized cardiovascular data elements that could be used in this network infrastructure. Recognizing the need for continuity with prior efforts, the Workgroup examined existing data standards sources. A basic set of 353 elements was selected. The NCRI staff then collaborated with the 2 major technical standards organizations in health care, the Clinical Data Interchange Standards Consortium and Health Level Seven International, as well as with staff from the National Cancer Institute Enterprise Vocabulary Services. Modeling and mapping were performed to represent (instantiate) the data elements in appropriate technical computer language structures for endorsement as an accepted data standard for public access and use. Fully implemented, these elements will facilitate clinical research, registry reporting, administrative reporting and regulatory compliance, and patient care. Copyright © 2013 American College of Cardiology Foundation. Published by Elsevier Inc. All rights reserved.

Abstracts 1987. New Horizons in Long Term Care: A Report on the Long Term Care Research and Demonstration Projects.

ERIC Educational Resources Information Center

Illinois State Dept. of Public Aid, Springfield.

This booklet provides a description of 14 projects which were awarded funds during fiscal year 1987 for collaborative research in long-term care to find new ways to treat long-term care patients in Illinois nursing homes. It includes the organization or institution receiving the award, an abstract of the research proposal, and the name of the…

Cultural and communicative competence in the caring relationship with patients from another culture.

PubMed

Hemberg, Jessica Anne Viveka; Vilander, Susann

2017-12-01

The global and multicultural society of today creates challenges that require multicultural competence among individuals, especially within caring contexts. This study assumes an intercultural perspective, and the aim is to uncover a new understanding of the caring community between nurses and patients when these do not speak the same language. The research question is: What is the significance of communication in a caring community when nurses and patients do not speak the same language? This qualitative study uses a hermeneutical approach. The material was collected through questionnaires with eight nurses and two adults from another culture. The texts were analysed through latent content analysis. Study participation, data storage and handling for research purposes were approved by the participants when they provided their informed consent. Permission to conduct the study was granted by an ethical committee of a hospital organisation. Human love is the basis for a caring relationship since it reaches beyond the limits of cultural differences. Integrity is vital for cultural respect and especially for the consideration of spiritual needs in the caring relationship. An affirming presence is essential for communion. Creative courage is fundamental for communication, and continuous information is vital for establishing trust within the caring relationship. One limitation to this study might be the limited number of participants (ten). Caring for a patient from another culture requires that nurses are open-minded and have the courage to encounter new challenges. It is essential for nurses to respect the patient's integrity but also to acquire knowledge in order to improve their cultural competence. Further research within this area should focus on the role of next of kin in intercultural caring and on how leadership may contribute to improving cultural competence within health organisations. © 2017 Nordic College of Caring Science.

Metrics for evaluating patient navigation during cancer diagnosis and treatment: crafting a policy-relevant research agenda for patient navigation in cancer care.

PubMed

Guadagnolo, B Ashleigh; Dohan, Daniel; Raich, Peter

2011-08-01

Racial and ethnic minorities as well as other vulnerable populations experience disparate cancer-related health outcomes. Patient navigation is an emerging health care delivery innovation that offers promise in improving quality of cancer care delivery to these patients who experience unique health-access barriers. Metrics are needed to evaluate whether patient navigation can improve quality of care delivery, health outcomes, and overall value in health care during diagnosis and treatment of cancer. Information regarding the current state of the science examining patient navigation interventions was gathered via search of the published scientific literature. A focus group of providers, patient navigators, and health-policy experts was convened as part of the Patient Navigation Leadership Summit sponsored by the American Cancer Society. Key metrics were identified for assessing the efficacy of patient navigation in cancer diagnosis and treatment. Patient navigation data exist for all stages of cancer care; however, the literature is more robust for its implementation during prevention, screening, and early diagnostic workup of cancer. Relatively fewer data are reported for outcomes and efficacy of patient navigation during cancer treatment. Metrics are proposed for a policy-relevant research agenda to evaluate the efficacy of patient navigation in cancer diagnosis and treatment. Patient navigation is understudied with respect to its use in cancer diagnosis and treatment. Core metrics are defined to evaluate its efficacy in improving outcomes and mitigating health-access barriers. Copyright © 2011 American Cancer Society.

Metrics for evaluating patient navigation during cancer diagnosis and treatment: crafting a policy-relevant research agenda for patient navigation in cancer care

PubMed Central

Guadagnolo, B. Ashleigh; Dohan, Daniel; Raich, Peter

2016-01-01

Background Racial and ethnic minorities as well as other vulnerable populations experience disparate cancer-related health outcomes. Patient navigation is an emerging health care delivery innovation that offers promise in improving quality of cancer care delivery to these patients who experience unique health access barriers. Metrics are needed to evaluate whether patient navigation can improve quality of care delivery, health outcomes, and overall value in health care during diagnosis and treatment of cancer. Methods Information regarding the current state of the science examining patient navigation interventions was gathered via search of the published scientific literature. A focus group of providers, patient navigators, and health policy experts was convened as part of the Patient Navigation Leadership Summit sponsored by the American Cancer Society. Key metrics were identified for assessing the efficacy of patient navigation in cancer diagnosis and treatment. Results Patient navigation data exists for all stages of cancer care; however, the literature is more robust for its implementation during prevention, screening, and early diagnostic work-up of cancer. Relatively fewer data are reported for outcomes and efficacy of patient navigation during cancer treatment. Metrics are proposed for a policy-relevant research agenda to evaluate the efficacy of patient navigation in cancer diagnosis and treatment. Conclusions Patient navigation is understudied with respect to its use in cancer diagnosis and treatment. Core metrics are defined to evaluate its efficacy in improving outcomes and mitigating health access barriers. PMID:21780091

The Effect of Community-Based Specialist Palliative Care Teams on Place of Care.

PubMed

Seow, Hsien; Dhaliwal, Gagan; Fassbender, Konrad; Rangrej, Jagadish; Brazil, Kevin; Fainsinger, Robin

2016-01-01

Prior research on community-based specialist palliative care teams used outcome measures of place of death and/or dichotomous outcome measures of acute care use in the last two weeks of life. However, existing research seldom measured the diverse places of care used and their timing prior to death. The study objective was to examine the place of care in the last 30 days of life. In this retrospective cohort study, patients who received care from a specialist palliative care team (exposed) were matched by propensity score to patients who received usual care in the community (unexposed) in Ontario, Canada. Measured was the percentage of patients in each place of care in the last month of life as a proportion of the total cohort. After matching, 3109 patients were identified in each group, where 79% had cancer and 77% received end-of-life home care. At 30 days compared to 7 days before death, the exposed group's proportions rose from 33% to 41% receiving home care and 14% to 15% in hospital, whereas the unexposed group's proportions rose from 28% to 32% receiving home care and 16% to 22% in hospital. Linear trend analysis (proportion over time) showed that the exposed group used significantly more home care services and fewer hospital days (p < 0.001) than the unexposed group. On the last day of life (place of death), the exposed group had 18% die in an in-patient hospital bed compared to 29% in usual care. Examining place of care in the last month can effectively illustrate the service use trajectory over time.

[Ethics committees bear a responsibility for patient information. Informed consent implies that the patient understands what he has consented to].

PubMed

Werkö, Lars

2002-03-19

A cornerstone in health care is the duty to inform patients not only of their right to partake in decisions about their care but also of the various options for treatment. This applies particularly in clinical research, for which the Helsinki Declaration has defined patients' rights. Informed consent is of great importance both in routine care and in clinical research. Directives defining informed consent in relation to clinical trials have been issued by The EU Commission. The Department of Health and Social Security in England has also published several documents governing patient consent. Even if information is given to the patient it is not always comprehended. In one study of cancer treatment about one third of the patients had misunderstood the information in certain respects.

Improving the evidence base in palliative care to inform practice and policy: thinking outside the box.

PubMed

Aoun, Samar M; Nekolaichuk, Cheryl

2014-12-01

The adoption of evidence-based hierarchies and research methods from other disciplines may not completely translate to complex palliative care settings. The heterogeneity of the palliative care population, complexity of clinical presentations, and fluctuating health states present significant research challenges. The aim of this narrative review was to explore the debate about the use of current evidence-based approaches for conducting research, such as randomized controlled trials and other study designs, in palliative care, and more specifically to (1) describe key myths about palliative care research; (2) highlight substantive challenges of conducting palliative care research, using case illustrations; and (3) propose specific strategies to address some of these challenges. Myths about research in palliative care revolve around evidence hierarchies, sample heterogeneity, random assignment, participant burden, and measurement issues. Challenges arise because of the complex physical, psychological, existential, and spiritual problems faced by patients, families, and service providers. These challenges can be organized according to six general domains: patient, system/organization, context/setting, study design, research team, and ethics. A number of approaches for dealing with challenges in conducting research fall into five separate domains: study design, sampling, conceptual, statistical, and measures and outcomes. Although randomized controlled trials have their place whenever possible, alternative designs may offer more feasible research protocols that can be successfully implemented in palliative care. Therefore, this article highlights "outside the box" approaches that would benefit both clinicians and researchers in the palliative care field. Ultimately, the selection of research designs is dependent on a clearly articulated research question, which drives the research process. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Fostering the exchange of real world data across different countries to answer primary care research questions: an UNLOCK study from the IPCRG.

PubMed

Cragg, Liza; Williams, Siân; van der Molen, Thys; Thomas, Mike; Correia de Sousa, Jaime; Chavannes, Niels H

2018-03-08

There is growing awareness amongst healthcare planners, providers and researchers of the need to make better use of routinely collected health data by translating it into actionable information that improves efficiency of healthcare and patient outcomes. There is also increased acceptance of the importance of real world research that recruits patients representative of primary care populations and evaluates interventions realistically delivered by primary care professionals. The UNLOCK Group is an international collaboration of primary care researchers and practitioners from 15 countries. It has coordinated and shared datasets of diagnostic and prognostic variables for COPD and asthma to answer research questions meaningful to professionals working in primary care over a 6-year period. Over this time the UNLOCK Group has undertaken several studies using data from unselected primary care populations from diverse contexts to evaluate the burden of disease, multiple morbidities, treatment and follow-up. However, practical and structural constraints have hampered the UNLOCK Group's ability to translate research ideas into studies. This study explored the constraints, challenges and successes experienced by the UNLOCK Group and its participants' learning as researchers and primary care practitioners collaborating to answer primary care research questions. The study identified lessons for future studies and collaborations that require data sharing across borders. It also explored specific challenges to fostering the exchange of primary care data in comparison to other datasets such as public health, prescribing or hospital data and mechanisms that may be used to overcome these.

Patient engagement with research: European population register study.

PubMed

McKevitt, Christopher; Fudge, Nina; Crichton, Siobhan; Bejot, Yannick; Daubail, Benoît; Di Carlo, Antonio; Fearon, Patricia; Kolominsky-Rabas, Peter; Sheldenkar, Anita; Newbound, Sophie; Wolfe, Charles D A

2015-12-01

Lay involvement in implementation of research evidence into practice may include using research findings to guide individual care, as well as involvement in research processes and policy development. Little is known about the conditions required for such involvement. To assess stroke survivors' research awareness, use of research evidence in their own care and readiness to be involved in research processes. Cross sectional survey of stroke survivors participating in population-based stroke registers in six European centres. The response rate was 74% (481/647). Reasons for participation in register research included responding to clinician request (56%) and to 'give something back' (19%); however, 20% were unaware that they were participating in a stroke register. Research awareness was generally low: 57% did not know the purpose of the register they had been recruited to; 73% reported not having received results from the register they took part in; 60% did not know about any research on stroke care. Few participants (7.6%) used research evidence during their consultations with a doctor. The 34% of participants who were interested in being involved in research were younger, more highly educated and already research aware. Across Europe, stroke survivors already participating in research appear ill informed about stroke research. Researchers, healthcare professionals and patient associations need to improve how research results are communicated to patient populations and research participants, and to raise awareness of the relationship between research evidence and increased quality of care. © 2014 John Wiley & Sons Ltd.

Task Descriptions in Diagnostic Radiology. Research Report No. 7. Volume 3, Machine-Related, Patient Care and Administrative Tasks: What Radiologists, Technologists, Nurses and Physicists Do to Run Things and Look After Patients and Equipment.

ERIC Educational Resources Information Center

Gilpatrick, Eleanor

The third of four volumes in Research Report No. 7 of the Health Services Mobility Study (HSMS), this book contains 149 diagnostic radiologist task descriptions that cover activities in the area of nursing (patient care), film processing, quality assurance, radiation protection, machine maintenance, housekeeping, and administration at the…

Enhancing mHealth Technology in the Patient-Centered Medical Home Environment to Activate Patients With Type 2 Diabetes: A Multisite Feasibility Study Protocol.

PubMed

Gimbel, Ronald; Shi, Lu; Williams, Joel E; Dye, Cheryl J; Chen, Liwei; Crawford, Paul; Shry, Eric A; Griffin, Sarah F; Jones, Karyn O; Sherrill, Windsor W; Truong, Khoa; Little, Jeanette R; Edwards, Karen W; Hing, Marie; Moss, Jennie B

2017-03-06

The potential of mHealth technologies in the care of patients with diabetes and other chronic conditions has captured the attention of clinicians and researchers. Efforts to date have incorporated a variety of tools and techniques, including Web-based portals, short message service (SMS) text messaging, remote collection of biometric data, electronic coaching, electronic-based health education, secure email communication between visits, and electronic collection of lifestyle and quality-of-life surveys. Each of these tools, used alone or in combination, have demonstrated varying degrees of effectiveness. Some of the more promising results have been demonstrated using regular collection of biometric devices, SMS text messaging, secure email communication with clinical teams, and regular reporting of quality-of-life variables. In this study, we seek to incorporate several of the most promising mHealth capabilities in a patient-centered medical home (PCMH) workflow. We aim to address underlying technology needs and gaps related to the use of mHealth technology and the activation of patients living with type 2 diabetes. Stated differently, we enable supporting technologies while seeking to influence patient activation and self-care activities. This is a multisite phased study, conducted within the US Military Health System, that includes a user-centered design phase and a PCMH-based feasibility trial. In phase 1, we will assess both patient and provider preferences regarding the enhancement of the enabling technology capabilities for type 2 diabetes chronic care management. Phase 2 research will be a single-blinded 12-month feasibility study that incorporates randomization principles. Phase 2 research will seek to improve patient activation and self-care activities through the use of the Mobile Health Care Environment with tailored behavioral messaging. The primary outcome measure is the Patient Activation Measure scores. Secondary outcome measures are Summary of Diabetes Self-care Activities Measure scores, clinical measures, comorbid conditions, health services resource consumption, and technology system usage statistics. We have completed phase 1 data collection. Formal analysis of phase 1 data has not been completed. We have obtained institutional review board approval and began phase 1 research in late fall 2016. The study hypotheses suggest that patients can, and will, improve their activation in chronic care management. Improved activation should translate into improved diabetes self-care. Expected benefits of this research to the scientific community and health care services include improved understanding of how to leverage mHealth technology to activate patients living with type 2 diabetes in self-management behaviors. The research will shed light on implementation strategies in integrating mHealth into the clinical workflow of the PCMH setting. ClinicalTrials.gov NCT02949037. https://clinicaltrials.gov/ct2/show/NCT02949037. (Archived by WebCite at http://www.webcitation.org/6oRyDzqei). ©Ronald Gimbel, Lu Shi, Joel E Williams, Cheryl J Dye, Liwei Chen, Paul Crawford, Eric A Shry, Sarah F Griffin, Karyn O Jones, Windsor W Sherrill, Khoa Truong, Jeanette R Little, Karen W Edwards, Marie Hing, Jennie B Moss. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 06.03.2017.

Transfer of patients from health care centres to special care services: analysis of travel distances in Nordic countries.

PubMed

Vuori, Jari; Kylänen, Marika; Tritter, Jonathan

2010-12-01

This paper highlights the importance of analysing patient transportation in Nordic circumpolar areas. The research questions we asked are as follows: How many Finnish patients have been transferred to special care intra-country and inter-country in 2009? Does it make any difference to health care policymakers if patients are transferred inter-country? We analysed the differences in distances from health care centres to special care services within Finland, Sweden and Norway and considered the health care policy implications. An analysis of the time required to drive between service providers using the "Google distance meter" (http://maps.google.com/); conducting interviews with key Finnish stakeholders; and undertaking a quantitative analyses of referral data from the Lapland Hospital District. Finnish patients are generally not transferred for health care services across national borders even if the distances are shorter. Finnish patients have limited access to health care services in circumpolar areas across the Nordic countries for 2 reasons. First, health professionals in Norway and Sweden do not speak Finnish, which presents a language problem. Second, the Social Insurance Institution of Finland does not cover the expenditures of travel or the costs of medicine. In addition, it seems that in circumpolar areas the density of Finnish service providers is greater than Swedish ones, causing many Swedish citizens to transfer to Finnish health care providers every year. However, future research is needed to determine the precise reasons for this.

The Patient Protection and Affordable Care Act of 2010: impact on otolaryngology practice and research.

PubMed

Sun, Gordon H; Davis, Matthew M

2012-05-01

The Patient Protection and Affordable Care Act (PPACA) was signed into law by President Barack Obama on March 23, 2010. Since its passage, the PPACA has led to increased health insurance coverage for millions more Americans, and it includes provisions leading to new avenues for clinical and health services research funding. The legislation also favors development of the primary care specialties and general surgery, increased training of midlevel health care providers, and medical training and service in underserved areas of the United States. However, the PPACA does not effectively engage otolaryngologists in quality improvement, despite modifications to the Physician Quality Reporting System. The legislation also levies a tax on cosmetic procedures, affecting both clinicians and patients. This article reviews the sections of the PPACA that are most pertinent to otolaryngologists and explains how these components of the bill will affect otolaryngologic practice and research over the coming decade.

Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study

PubMed Central

Whitley, Edgar A; Lund, David; Kaye, Jane

2016-01-01

Background Electronic health records are widely acknowledged to provide an important opportunity to anonymize patient-level health care data and collate across populations to support research. Nonetheless, in the wake of public and policy concerns about security and inappropriate use of data, conventional approaches toward data governance may no longer be sufficient to respect and protect individual privacy. One proposed solution to improve transparency and public trust is known as Dynamic Consent, which uses information technology to facilitate a more explicit and accessible opportunity to opt out. In this case, patients can tailor preferences about whom they share their data with and can change their preferences reliably at any time. Furthermore, electronic systems provide opportunities for informing patients about data recipients and the results of research to which their data have contributed. Objective To explore patient perspectives on the use of anonymized health care data for research purposes. To evaluate patient perceptions of a Dynamic Consent model and electronic system to enable and implement ongoing communication and collaboration between patients and researchers. Methods A total of 26 qualitative interviews and three focus groups were conducted that included a video presentation explaining the reuse of anonymized electronic patient records for research. Slides and tablet devices were used to introduce the Dynamic Consent system for discussion. A total of 35 patients with chronic rheumatic disease with varying levels of illness and social deprivation were recruited from a rheumatology outpatient clinic; 5 participants were recruited from a patient and public involvement health research network. Results Patients were supportive of sharing their anonymized electronic patient record for research, but noted a lack of transparency and awareness around the use of data, making it difficult to secure public trust. While there were general concerns about detrimental consequences of data falling into the wrong hands, such as insurance companies, 39 out of 40 (98%) participants generally considered that the altruistic benefits of sharing health care data outweighed the risks. Views were mostly positive about the use of an electronic interface to enable greater control over consent choices, although some patients were happy to share their data without further engagement. Participants were particularly enthusiastic about the system as a means of enabling feedback regarding data recipients and associated research results, noting that this would improve trust and public engagement in research. This underlines the importance of patient and public involvement and engagement throughout the research process, including the reuse of anonymized health care data for research. More than half of patients found the touch screen interface easy to use, although a significant minority, especially those with limited access to technology, expressed some trepidation and felt they may need support to use the system. Conclusions Patients from a range of socioeconomic backgrounds viewed a digital system for Dynamic Consent positively, in particular, feedback about data recipients and research results. Implementation of a digital Dynamic Consent system would require careful interface design and would need to be located within a robust data infrastructure; it has the potential to improve trust and engagement in electronic medical record research. PMID:27083521

Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study.

PubMed

Spencer, Karen; Sanders, Caroline; Whitley, Edgar A; Lund, David; Kaye, Jane; Dixon, William Gregory

2016-04-15

Electronic health records are widely acknowledged to provide an important opportunity to anonymize patient-level health care data and collate across populations to support research. Nonetheless, in the wake of public and policy concerns about security and inappropriate use of data, conventional approaches toward data governance may no longer be sufficient to respect and protect individual privacy. One proposed solution to improve transparency and public trust is known as Dynamic Consent, which uses information technology to facilitate a more explicit and accessible opportunity to opt out. In this case, patients can tailor preferences about whom they share their data with and can change their preferences reliably at any time. Furthermore, electronic systems provide opportunities for informing patients about data recipients and the results of research to which their data have contributed. To explore patient perspectives on the use of anonymized health care data for research purposes. To evaluate patient perceptions of a Dynamic Consent model and electronic system to enable and implement ongoing communication and collaboration between patients and researchers. A total of 26 qualitative interviews and three focus groups were conducted that included a video presentation explaining the reuse of anonymized electronic patient records for research. Slides and tablet devices were used to introduce the Dynamic Consent system for discussion. A total of 35 patients with chronic rheumatic disease with varying levels of illness and social deprivation were recruited from a rheumatology outpatient clinic; 5 participants were recruited from a patient and public involvement health research network. Patients were supportive of sharing their anonymized electronic patient record for research, but noted a lack of transparency and awareness around the use of data, making it difficult to secure public trust. While there were general concerns about detrimental consequences of data falling into the wrong hands, such as insurance companies, 39 out of 40 (98%) participants generally considered that the altruistic benefits of sharing health care data outweighed the risks. Views were mostly positive about the use of an electronic interface to enable greater control over consent choices, although some patients were happy to share their data without further engagement. Participants were particularly enthusiastic about the system as a means of enabling feedback regarding data recipients and associated research results, noting that this would improve trust and public engagement in research. This underlines the importance of patient and public involvement and engagement throughout the research process, including the reuse of anonymized health care data for research. More than half of patients found the touch screen interface easy to use, although a significant minority, especially those with limited access to technology, expressed some trepidation and felt they may need support to use the system. Patients from a range of socioeconomic backgrounds viewed a digital system for Dynamic Consent positively, in particular, feedback about data recipients and research results. Implementation of a digital Dynamic Consent system would require careful interface design and would need to be located within a robust data infrastructure; it has the potential to improve trust and engagement in electronic medical record research.

Design of the Violence and Stress Assessment (ViStA) study: a randomized controlled trial of care management for PTSD among predominantly Latino patients in safety net health centers.

PubMed

Meredith, Lisa S; Eisenman, David P; Green, Bonnie L; Kaltman, Stacey; Wong, Eunice C; Han, Bing; Cassells, Andrea; Tobin, Jonathan N

2014-07-01

Posttraumatic stress disorder (PTSD) is a common problem in primary care. Although effective treatments are available, little is known about whether such treatments are effective within the context of Federally Qualified Health Centers (FQHCs) that serve as national "safety nets" for providing primary care for low income and underinsured patients. The Violence and Stress Assessment (ViStA) study is the first randomized controlled trial (RCT) to test the impact of a care management intervention for treating PTSD in FQHCs. To develop a PTSD management intervention appropriate for lower resource FQHCs and the predominantly Latino patients they serve, formative work was conducted through a collaborative effort between researchers and an FQHC practice-based research network. This article describes how FQHC stakeholders were convened to review, assess, and prioritize evidence-based strategies for addressing patient, clinician, and system-level barriers to care. This multi-component care management intervention incorporates diagnosis with feedback, patient education and activation; navigation and linkage to community resources; clinician education and medication guidance; and structured cross-disciplinary communication and continuity of care, all facilitated by care managers with FQHC experience. We also describe the evaluation design of this five-year RCT and the characteristics of the 404 English or Spanish speaking patients enrolled in the study and randomized to either the intervention or to usual care. Patients are assessed at baseline, six months, and 12 months to examine intervention effectiveness on PTSD, other mental health symptoms, health-related quality-of-life, health care service use; and perceived barriers to care and satisfaction with care. Copyright © 2014 Elsevier Inc. All rights reserved.

Nurses' Use of iPads in Home Care-What Does It Mean to Patients?: A Qualitative Study.

PubMed

Vilstrup, Dorte Lindstrøm; Madsen, Esben Elholm; Hansen, Christl Fandt; Wind, Gitte

2017-03-01

Although the use of technology is growing, little is known about how patients perceive technology in the form of tools used by health professionals. The prevailing view in the literature is that technology is cold, compared with the warm hands of nurses, but research regarding nurses' use of technology such as tablets is scarce. Even scarcer is research on how patients perceive the use of technological tools. This study examines patients' perspectives on the use of iPads by home care nurses. Semistructured interviews were conducted with seven participants who were receiving home care in Denmark, aged 62 to 90 years, with different backgrounds and experiences with technology. Participants viewed nurses' use of iPads as an everyday occurrence, reflecting societal growth in the use of technology, and some perceived it as a sign of professionalism with the potential to enhance care. Their perceptions varied somewhat according to their baseline knowledge and experience with the technology. Although nurses may view technology as cold, the findings suggest that patients have a slightly warmer view of it. More patient-centered research into the use of technology in healthcare is needed.

Consensus Statement on Advancing Research in Emergency Department Operations and Its Impact on Patient Care

PubMed Central

Ward, Michael J.; Chang, Anna Marie; Pines, Jesse M.; Jouriles, Nick; Yealy, Donald M.

2016-01-01

The Consensus Conference on “Advancing Research in Emergency Department (ED) Operations and Its Impact on Patient Care,” hosted by The ED Operations Study Group (EDOSG), convened to craft a framework for future investigations in this important but underserved area. The EDOSG is a research consortium dedicated to promoting evidence based clinical practice in Emergency Medicine. The consensus process format was a modified version of the NIH Model for Consensus Conference Development. Recommendations provide an action plan for how to improve ED operations study design, create a facilitating research environment, identify data measures of value for process and outcomes research, and disseminate new knowledge in this area. Specifically, we called for eight key initiatives: 1) the development of universal measures for ED patient care processes; 2) attention to patient outcomes, in addition to process efficiency and best practice compliance; 3) the promotion of multi-site clinical operations studies to create more generalizable knowledge; 4) encouraging the use of mixed methods to understand the social community and human behavior factors that influence ED operations; 5) the creation of robust ED operations research registries to drive stronger evidence based research, 6) prioritizing key clinical questions with the input of patients, clinicians, medical leadership, emergency medicine organizations, payers, and other government stakeholders; 7) more consistently defining the functional components of the ED care system including observation units, fast tracks, waiting rooms, laboratories and radiology sub-units; and 8) maximizing multidisciplinary knowledge dissemination via emergency medicine, public health, general medicine, operations research and nontraditional publications. PMID:26014365

Consensus statement on advancing research in emergency department operations and its impact on patient care.

PubMed

Yiadom, Maame Yaa A B; Ward, Michael J; Chang, Anna Marie; Pines, Jesse M; Jouriles, Nick; Yealy, Donald M

2015-06-01

The consensus conference on "Advancing Research in Emergency Department (ED) Operations and Its Impact on Patient Care," hosted by The ED Operations Study Group (EDOSG), convened to craft a framework for future investigations in this important but understudied area. The EDOSG is a research consortium dedicated to promoting evidence-based clinical practice in emergency medicine. The consensus process format was a modified version of the NIH Model for Consensus Conference Development. Recommendations provide an action plan for how to improve ED operations study design, create a facilitating research environment, identify data measures of value for process and outcomes research, and disseminate new knowledge in this area. Specifically, we call for eight key initiatives: 1) the development of universal measures for ED patient care processes; 2) attention to patient outcomes, in addition to process efficiency and best practice compliance; 3) the promotion of multisite clinical operations studies to create more generalizable knowledge; 4) encouraging the use of mixed methods to understand the social community and human behavior factors that influence ED operations; 5) the creation of robust ED operations research registries to drive stronger evidence-based research; 6) prioritizing key clinical questions with the input of patients, clinicians, medical leadership, emergency medicine organizations, payers, and other government stakeholders; 7) more consistently defining the functional components of the ED care system, including observation units, fast tracks, waiting rooms, laboratories, and radiology subunits; and 8) maximizing multidisciplinary knowledge dissemination via emergency medicine, public health, general medicine, operations research, and nontraditional publications. © 2015 by the Society for Academic Emergency Medicine.

The Dangers of Involving Children as Family Caregivers of Palliative Home-Based-Care to Advanced HIV/AIDS Patients

PubMed Central

Kangethe, Simon

2010-01-01

The aim of this research paper is to explore the dangers of involving children as family caregivers of palliative care and home-based-care to advanced HIV/AIDS patients, while its objective is to discuss the dangers or perfidiousness that minors especially the girl children face as they handle care giving of advanced HIV/AIDS patients. The article has relied on eclectic data sources. The research has foundminors disadvantaged by the following: being engulfed by fear and denied rights through care giving; being emotionally and physiologically overwhelmed; being oppressed and suppressed by caring duties; being at risk of contracting HIV/AIDS; and having their education compromised by care giving. The paper recommends: (1) strengthening and emphasizing on children’s rights; (2) maintaining gender balance in care giving; (3) implementation and domestication of the United Nations conventions on the rights of children; (4) community awareness on equal gender co participation in care giving; (5) and fostering realization that relying on child care giving is a negative score in fulfilling global Millennium Development Goals. PMID:21218000

Getting to value in neurological care: a roadmap for academic neurology.

PubMed

Holloway, Robert G; Ringel, Steven P

2011-06-01

Academic neurology is undergoing transformational changes. The public investment in biomedical research and clinical care is enormous and there is a growing perception that the return on this huge investment is insufficient. Hospitals, departments, and individual neurologists should expect more scrutiny as information about their quality of care and financial relationships with industry are increasingly reported to the public. There are unprecedented changes occurring in the financing and delivery of health care and research that will have profound impact on the mission and operation of academic departments of neurology. With the passage of the Patient Protection and Affordable Care Act (PPACA) there will be increasing emphasis on research that demonstrates value and includes the patient's perspective. Here we review neurological investigations of our clinical and research enterprises that focus on quality of care and comparative effectiveness, including cost-effectiveness. By highlighting progress made and the challenges that lie ahead, we hope to create a clinical, educational, and research roadmap for academic departments of neurology to thrive in today's increasingly regulated environment. Copyright © 2011 American Neurological Association.

A patient perspective in research on intercultural caring in maternity care: A meta-ethnography

PubMed Central

Wikberg, Anita; Bondas, Terese

2010-01-01

The aim of this study is to explore and describe a patient perspective in research on intercultural caring in maternity care. In total, 40 studies are synthesized using Noblit and Hare's meta-ethnography method. The following opposite metaphors were found: caring versus non-caring; language and communication problems versus information and choice; access to medical and technological care versus incompetence; acculturation: preserving the original culture versus adapting to a new culture; professional caring relationship versus family and community involvement; caring is important for well-being and health versus conflicts cause interrupted care; vulnerable women with painful memories versus racism. Alice in Wonderland emerged as an overarching metaphor to describe intercultural caring in maternity care. Furthermore, intercultural caring is seen in different dimensions of uniqueness, context, culture, and universality. There are specific cultural and maternity care features in intercultural caring. There is an inner core of caring consisting of respect, presence, and listening as well as external factors such as economy and organization that impact on intercultural caring. Moreover, legal status of the patient, as well as power relationships and racism, influences intercultural caring. Further meta-syntheses about well-documented intercultural phenomena and ethnic groups, as well as empirical studies about current phenomena, are suggested. PMID:20640028

A patient perspective in research on intercultural caring in maternity care: A meta-ethnography.

PubMed

Wikberg, Anita; Bondas, Terese

2010-02-08

The aim of this study is to explore and describe a patient perspective in research on intercultural caring in maternity care. In total, 40 studies are synthesized using Noblit and Hare's meta-ethnography method. The following opposite metaphors were found: caring versus non-caring; language and communication problems versus information and choice; access to medical and technological care versus incompetence; acculturation: preserving the original culture versus adapting to a new culture; professional caring relationship versus family and community involvement; caring is important for well-being and health versus conflicts cause interrupted care; vulnerable women with painful memories versus racism. Alice in Wonderland emerged as an overarching metaphor to describe intercultural caring in maternity care. Furthermore, intercultural caring is seen in different dimensions of uniqueness, context, culture, and universality. There are specific cultural and maternity care features in intercultural caring. There is an inner core of caring consisting of respect, presence, and listening as well as external factors such as economy and organization that impact on intercultural caring. Moreover, legal status of the patient, as well as power relationships and racism, influences intercultural caring. Further meta-syntheses about well-documented intercultural phenomena and ethnic groups, as well as empirical studies about current phenomena, are suggested.

Health care competition, strategic mission, and patient satisfaction: research model and propositions

PubMed Central

Rivers, Patrick A.; Glover, Saundra H.

2010-01-01

Purpose In all industries, competition among businesses has long been encouraged as a mechanism to increase value for patients. In other words, competition ensures the provision of better products and services to satisfy the needs of customers This paper aims to develop a model that can be used to empirically investigate a number of complex issues and relationships associated with competition in the health care industry. Design/methodology/approach A literature review was conducted. A total of 50 items of literature related to the subject were reviewed.. Various perspectives of competition, the nature of service quality, health system costs, and patient satisfaction in health care are examined Findings A model of the relationship among these variables is developed. The model depicts patient satisfaction as an outcome measure directly dependent on competition. Quality of care and health care systems costs, while also directly dependent on the strategic mission and goals, are considered as determinants of customer satisfaction as well. The model is discussed in the light of propositions for empirical research. Practical implications Empirical studies based on the model proposed in this paper should help identify areas with significant impact on patient satisfaction while maintaining high quality of service at lower costs in a competitive environment. Originality/value The authors develop a research model which included propositions to examine the complex issues of competition in the health care industry. PMID:19579575

Physicians' social competence in the provision of care to persons living in poverty: research protocol.

PubMed

Loignon, Christine; Haggerty, Jeannie L; Fortin, Martin; Bedos, Christophe P; Allen, Dawn; Barbeau, David

2010-03-25

The quality of the physician-patient therapeutic relationship is a key factor in the effectiveness of care. Unfortunately, physicians and people living in poverty inhabit very different social milieux, and this great social distance hinders the development of a therapeutic alliance. Social competence is a process based on knowledge, skills and attitudes that support effective interaction between the physician and patient despite the intervening social distance. It enables physicians to better understand their patients' living conditions and to adapt care to patients' needs and abilities. This qualitative research is based on a comprehensive design using in-depth semi-structured interviews with 25 general practitioners working with low-income patients in Montreal's metropolitan area (Québec, Canada). Physicians will be recruited based on two criteria: they provide care to low-income patients with at least one chronic illness, and are identified by their peers as having expertise in providing care to a poor population. For this recruitment, we will draw upon contacts we have made in another research study (Loignon et al., 2009) involving clinics located in poor neighbourhoods. That study will include in-clinic observations and interviews with physicians, both of which will help us identify physicians who have developed skills for treating low-income patients. We will also use the snowball sampling technique, asking participants to refer us to other physicians who meet our inclusion criteria. The semi-structured interviews, of 60 to 90 minutes each, will be recorded and transcribed. Our techniques for ensuring internal validity will include data analysis of transcribed interviews, indexation and reduction of data with software qualitative analysis, and development and validation of interpretations. This research project will allow us to identify the dimensions of the social competence process that helps physicians establish therapeutic relationships with low-income patients living with chronic illness. This study will also offer concrete recommendations for improving health interventions among low-income patients and for helping them to better manage their chronic illnesses. Ultimately, our aim is to strengthen the capacity of the health care system and of professionals to provide care that is adapted to the social conditions of people living in poverty.

Self-care and HIV/AIDS patients: nursing care systematization.

PubMed

Caetano, Joselany Afio; Pagliuca, Lorita Marlena Freitag

2006-01-01

This research aimed at systematizing nursing care to HIV/aids patients in view of Orem's Self-care Deficit Nursing Theory, using the convergent-care method and the Self-Care Nursing Process. Subjects were thirteen HIV/AIDS patients attended at a non-governmental organization in Fortaleza/CE, Brazil. We used interview techniques, physical examination, observation and information records, with a structured instrument, addressing requisites related to universal self-care, development and health alterations. Self-care deficits corresponded to nineteen nursing diagnoses, named according to NANDA's Taxonomy II, ten of which were based on the requisites for universal self-care, five on the requisites for self-care related to development and four on the requisites for self-care related to health deviations. In care planning, goals were established and the system and health methods were selected, prioritizing support-education actions in order to engage HIV/aids patients in self-care.

Mother-infant home care drives quality in a managed care environment.

PubMed

Malnory, M

1997-04-01

Advocates of inpatient managed care employing clinical pathways are confident that this patient management strategy reduces cost while promoting equivalent patient outcomes. Other health care professionals are concerned that cost reductions place patients at higher risk for adverse health events. Research is needed to demonstrate the true impact of cost-containment strategies on clinical outcomes. The article describes a study in progress comparing patients conventionally managed by their physicians with similar patients whose overall management involved a nurse case manager. This study explores the issue of resource costs that can be linked to clinical and financial outcome measures.

Interactions between patients and dental care providers: does gender matter?

PubMed

Inglehart, Marita R

2013-04-01

Research findings concerning the role of gender in patient-physician interactions can inform considerations about the role of gender in patient-dental care provider interactions. Medical research showed that gender differences in verbal and nonverbal communication in medical settings exist and that they affect the outcomes of these interactions. The process of communication is shaped by gender identities, gender stereotypes, and attitudes. Future research needs to consider the cultural complexity and diversity in which gender issues are embedded and the degree to which ongoing value change will shape gender roles and in turn interactions between dental patients and their providers. Copyright © 2013 Elsevier Inc. All rights reserved.

Bourdieu's theory of practice and its potential in nursing research.

PubMed

Rhynas, Sarah J

2005-04-01

This paper seeks to consider the utility of Bourdieu's "Theory of Practice" in nursing, and considers specifically its use as a framework for research exploring nurses' conceptualizations of illness and the patients in their care. Bourdieu's work uses the concepts of field, capital and habitus to explain interactions within the social world. This paper describes these concepts and their relationship with nursing is discussed using dementia care as an example. The work of French scholar Pierre Bourdieu has contributed to debates throughout the social sciences, but has had relatively little attention in the nursing literature. Pierre Bourdieu's work developed against a backdrop of change in the academic world. The emergence of the social sciences and the debate around objective and subjective styles of research were influential in the development of his "Theory of Practice". The importance of the conceptualization process is discussed, and the considerable potential influence of conceptualization on patient care is highlighted. Reflexivity is a cornerstone of Bourdieu's work, and is an important feature of nursing research. Examples of health care research using his work as a framework are discussed, and some of the challenges of the approach are outlined. The use of Bourdieu's "Theory of Practice" as a research framework could allow nurse researchers to explore the interactions of nurses with the structures, agents and symbols of illness within the field of care. This work could enhance understanding of how nurses view and react to patients in their care, and promote the development of practice innovations and policy change. The theory may, therefore, have much to offer future nursing research.

Patients' views of teamwork in the emergency department offer insights about team performance.

PubMed

Henry, Beverly W; McCarthy, Danielle M; Nannicelli, Anna P; Seivert, Nicholas P; Vozenilek, John A

2016-06-01

Research into efforts to engage patients in the assessment of health-care teams is limited. To explore, through qualitative methods, patient awareness of teamwork-related behaviours observed during an emergency department (ED) visit. Researchers used semi-structured question guides for audio-recorded interviews and analysed their verbatim transcripts. Researchers conducted individual phone interviews with 6 teamwork subject matter experts (SMEs) and held 5 face-to-face group interviews with patients and caregivers (n = 25) about 2 weeks after discharge from the emergency department (ED). SMEs suggested that a range of factors influence patient perspectives of teams. Many patients perceived the health-care team within the context of their expectations of an ED visit and their treatment plan. Four themes emerged: (i) patient-centred views highlight gaps in coordination and communication; (ii) team processes do concern patients; (iii) patients are critical observers of ways that team members present their team roles; (iv) patients' observations of team members relate to patients' views of team effectiveness. Analysis also indicated that patients viewed health-care team members' interactions with each other as proxy for how team members actually felt about patients. Results from both sets of interviews (SME and patient) indicated that patient observations of teamwork could add to assessment of team processes/frameworks. Patients' understanding about teamwork organization seemed helpful and witnessed interteam communication appeared to influence patient confidence in the team. Patients perspectives are an important part of assessment in health care and suggest potential areas for improvement through team training. © 2013 John Wiley & Sons Ltd.

Theory-based practice in a major medical centre.

PubMed

Alligood, Martha Raile

2011-11-01

This project was designed to improve care quality and nursing staff satisfaction. Nursing theory structures thought and action as demonstrated by evidence of improvement in complex health-care settings. Nursing administrators selected Modelling and Role-Modelling (MRM) for the theory-based practice goal in their strategic plan. An action research approach structured implementation of MRM in a 1-year consultation project in 2001-2002. Quality of health care improved according to national quality assessment ratings, as well as patient satisfaction and nurse satisfaction. Modelling and Role-Modelling demonstrated capacity to structure nursing thought and action in patient care in a major medical centre. Uniformity of patient care language was valued by nurses as well as by allied health providers who wished to learn the holistic MRM style of practice. The processes of MRM and action research contributed to project success. A positive health-care change project was carried out in a large medical centre with action research. Introducing MRM theory-based practice was a beneficial decision by nursing administration that improved care and nurse satisfaction. Attention to nursing practice stimulated career development among the nurses to pursue bachelors, masters, and doctoral degrees. © 2011 Blackwell Publishing Ltd.

Patients' rights on the World Wide Web.

PubMed

Taylor, M K

2001-01-01

Managed care reform, commonly referred to as "patients' rights" legislation, has become a hot topic. Many groups, including consumers, health care professionals, employers, managed care organizations, political parties, and government agencies, have strong opinions about measures that should be taken and what the outcomes of these measures might be. Those investigating this multidisciplinary topic will want to examine health care administration, ethics, health services research, and political science sources. Web resources covered in this article include: clearinghouses; government agencies; federal legislative and legal sites; and home pages of professional and trade associations, policy research institutes, and consumer advocacy organizations.

Danish Palliative Care Database.

PubMed

Groenvold, Mogens; Adsersen, Mathilde; Hansen, Maiken Bang

2016-01-01

The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. The study population is all patients in Denmark referred to and/or in contact with SPC after January 1, 2010. The main variables in DPD are data about referral for patients admitted and not admitted to SPC, type of the first SPC contact, clinical and sociodemographic factors, multidisciplinary conference, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1) referred and eligible patients who were actually admitted to SPC, 2) patients who waited <10 days before admission to SPC, 3) patients who died from cancer and who obtained contact with SPC, 4) patients who were screened with European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care at admission to SPC, and 5) patients who were discussed at a multidisciplinary conference. In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100%) referred to SPC were registered in DPD. In total, 41,104 unique cancer patients were registered in DPD during the 5 years 2010-2014. Of those registered, 96% had cancer. DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness.

Comprehensive geriatric care for patients with hip fractures: a prospective, randomised, controlled trial.

PubMed

Prestmo, Anders; Hagen, Gunhild; Sletvold, Olav; Helbostad, Jorunn L; Thingstad, Pernille; Taraldsen, Kristin; Lydersen, Stian; Halsteinli, Vidar; Saltnes, Turi; Lamb, Sarah E; Johnsen, Lars G; Saltvedt, Ingvild

2015-04-25

Most patients with hip fractures are characterised by older age (>70 years), frailty, and functional deterioration, and their long-term outcomes are poor with increased costs. We compared the effectiveness and cost-effectiveness of giving these patients comprehensive geriatric care in a dedicated geriatric ward versus the usual orthopaedic care. We did a prospective, single-centre, randomised, parallel-group, controlled trial. Between April 18, 2008, and Dec 30, 2010, we randomly assigned home-dwelling patients with hip-fractures aged 70 years or older who were able to walk 10 m before their fracture, to either comprehensive geriatric care or orthopaedic care in the emergency department, to achieve the required sample of 400 patients. Randomisation was achieved via a web-based, computer-generated, block method with unknown block sizes. The primary outcome, analysed by intention to treat, was mobility measured with the Short Physical Performance Battery (SPPB) 4 months after surgery for the fracture. The type of treatment was not concealed from the patients or staff delivering the care, and assessors were only partly masked to the treatment during follow-up. This trial is registered with ClinicalTrials.gov, number NCT00667914. We assessed 1077 patients for eligibility, and excluded 680, mainly for not meeting the inclusion criteria such as living in a nursing home or being aged less than 70 years. Of the remaining patients, we randomly assigned 198 to comprehensive geriatric care and 199 to orthopaedic care. At 4 months, 174 patients remained in the comprehensive geriatric care group and 170 in the orthopaedic care group; the main reason for dropout was death. Mean SPPB scores at 4 months were 5·12 (SE 0·20) for comprehensive geriatric care and 4·38 (SE 0·20) for orthopaedic care (between-group difference 0·74, 95% CI 0·18-1·30, p=0·010). Immediate admission of patients aged 70 years or more with a hip fracture to comprehensive geriatric care in a dedicated ward improved mobility at 4 months, compared with the usual orthopaedic care. The results suggest that the treatment of older patients with hip fractures should be organised as orthogeriatric care. Norwegian Research Council, Central Norway Regional Health Authority, St Olav Hospital Trust and Fund for Research and Innovation, Liaison Committee between Central Norway Regional Health Authority and the Norwegian University of Science and Technology, the Department of Neuroscience at the Norwegian University of Science and Technology, Foundation for Scientific and Industrial Research at the Norwegian Institute of Technology (SINTEF), and the Municipality of Trondheim. Copyright © 2015 Elsevier Ltd. All rights reserved.

The dignified approach to care: a pilot study using the patient dignity question as an intervention to enhance dignity and person-centred care for people with palliative care needs in the acute hospital setting.

PubMed

Johnston, Bridget; Pringle, Jan; Gaffney, Marion; Narayanasamy, Melanie; McGuire, Margaret; Buchanan, Deans

2015-01-01

Providing person-centred, dignity-conserving care for hospitalised patients is central to many healthcare policies and essential to the provision of effective palliative care. The Patient Dignity Question (PDQ) "What do I need to know about you as a person to take the best care of you that I can?" was designed from empirical research on patients' perceptions of their dignity at end of life to help healthcare professionals (HCPs) understand the patient as a person. This mixed method pilot study was designed to inform a larger multisite study in the future. It tests the hypothesis that the PDQ intervention could be used to enhance a more person-centred climate for people with palliative care needs in the acute hospital setting, and provide evidence regarding its acceptability. Outcome measures pre and post intervention Person-centred Climate Questionnaire--patient version (PCQ-P), and the Consultation and Relational Empathy (CARE) measure; PDQ feedback questionnaires were used for all participants post intervention, in addition to qualitative interviews. 30 patients, 17 HCPs, and 4 family members participated. Results showed a positive correlation between higher PCQ-P scores and higher CARE scores, indicating that the PDQ can make improvements to a person-centred environment and levels of empathy perceived by patients. Individual results from the PCQ-P and the CARE indicated overall improvements in the majority of fields. The PDQ supported disclosure of information previously unknown to HCPs, has implications for improving person-centred care. Positive results from PDQ feedback questionnaires were received from all participants. Qualitative findings indicated patients' appreciation of staff (Attributes and attitudes), that patients wanted staff to have awareness of them (Know me as a person), take the time to talk, and work flexibly, to allow for patient individuality (Time and place). The PDQ has potential to improve patients' perceptions of care, and HCP attitudes. Furthermore, it was well received by participants. The PDQ could be incorporated into clinical practice for the care of palliative care patients in the acute setting to the benefit of personalized and dignified care. Further research using the PDQ across wider geographical areas, and more diverse settings, would be beneficial.

Communication for end-of-life care planning among Korean patients with terminal cancer: A context-oriented model.

PubMed

Koh, Su Jin; Kim, Shinmi; Kim, Jinshil

2016-02-01

In Korea, patients with terminal cancer are often caught out of the loop in end-of-life (EoL) care discussions. Healthcare professionals also have difficulty engaging in such communication in a variety of healthcare contexts. Therefore, the objective of our study was to develop a communication model for EoL care decision making compatible with the clinical environment in Korea. Using focus-group interview methodology, participants included eight doctors and five nurses who provide EoL care for terminal cancer patients in acute hospital settings or hospice care facilities in various provinces of Korea. Five themes emerged regarding EoL care discussion, which included: (1) timing, (2) responsible professionals, (3) disclosure of bad news, (4) content areas of EoL care discussion, and (5) implementing strategies for EoL care discussions. These themes were based on development of a communication algorithm for EoL discussion among patients with terminal cancer. A structural communication step for delivery of a terminal prognosis was specified at the phase of disclosure of bad news: beginning with determination of a patient's decision-making capability, followed by a patient's perception of his/her condition, a patient's wish to know, family dynamics, and a patient's and/or family's readiness for EoL discussions. The proposed context-oriented communication algorithm could provide a helpful guideline for EoL communication and, accordingly, facilitate meaningful improvements in EoL care in Korean clinical practice. The feasibility of this algorithm has not yet been determined, and its validation in a larger sample of patients with terminal cancers, using a quantitative research methodology, is a priority of research.

Comparison of Two Educational Methods on Nurses' Adoption of Safe Patient Handling Techniques

ERIC Educational Resources Information Center

Folami, Florence

2010-01-01

Musculoskeletal injuries caused by patient lifting and transfers are a concern to health care workers. The Safe Patient Handling Act calls for all health care organizations to move to mechanical assistance from previous manual methods of transfers. This research analyzed two different educational programs that addressed safe patient handling for…

Needs for Psychosocial Support in Home Care Hospice Patients.

ERIC Educational Resources Information Center

Gotay, Carolyn Cook

There is little research documenting the psychosocial support needs of hospice patients and their families. To assess hospice patients' and families' use of and perceptions of need for support, 77 patients and their families were interviewed during home care for terminal illness (Group 1), and 50 family members (84% spouses) were interviewed 1…

Using Patient Reported Outcomes and PROMIS in Research and Clinical Applications: Experiences from the PCORI Pilot Projects

PubMed Central

Bingham, Clifton O.; Bartlett, Susan J.; Merkel, Peter A.; Mielenz, Thelma J.; Pilkonis, Paul A.; Edmundson, Lauren; Moore, Emily; Sabharwal, Rajeev K.

2016-01-01

Purpose The field of patient-centered outcomes research (PCOR) continues to develop. Patient-reported outcomes, and in particular, the Patient-Reported Outcomes Measurement Information System (PROMIS) contribute complementary data to clinician-derived outcomes traditionally used in health decision-making. However, there has been little work to understand how PROMIS measures may inform or be integrated into PCOR or clinical applications. Methods Lead investigators from four pilot projects funded by the Patient-Centered Outcomes Research Institute (PCORI) collaborated to discuss lessons learned about the use of PROMIS in PCOR studies via virtual and in-person meetings. In addition, a qualitative data collection tool was used to assess the pilot projects’ experiences. Results Lessons learned from the pilot projects centered on practical elements of research design, such as choosing the right outcomes to study, considering the advantages and limitations of the PROMIS short forms and computer adaptive technology versions, planning ahead for a feasible data collection process, maintaining the focus on patients by ensuring that the research is truly patient-centered, and helping patients and providers make the most of PROMIS in care. Conclusions The PCORI Pilot Projects demonstrated that PROMIS can be successfully used to conduct research that will help patients make decisions about their care. Interest in PCOR continues to grow and the lessons learned from these projects about the use of PROMIS will be helpful to investigators. Given the numerous benefits of PROMIS, implementing this tool in research and care will hopefully lead to significant progress in measuring health outcomes that are meaningful and relevant to all stakeholders. PMID:26914103

Using patient-reported outcomes and PROMIS in research and clinical applications: experiences from the PCORI pilot projects.

PubMed

Bingham, Clifton O; Bartlett, Susan J; Merkel, Peter A; Mielenz, Thelma J; Pilkonis, Paul A; Edmundson, Lauren; Moore, Emily; Sabharwal, Rajeev K

2016-08-01

The field of patient-centered outcomes research (PCOR) continues to develop. Patient-reported outcomes and, in particular the Patient-Reported Outcomes Measurement Information System (PROMIS) contribute complementary data to clinician-derived outcomes traditionally used in health decision-making. However, there has been little work to understand how PROMIS measures may inform or be integrated into PCOR or clinical applications. Lead investigators from four pilot projects funded by the Patient-Centered Outcomes Research Institute (PCORI) collaborated to discuss lessons learned about the use of PROMIS in PCOR studies via virtual and in-person meetings. In addition, a qualitative data collection tool was used to assess the pilot projects' experiences. Lessons learned from the pilot projects centered on practical elements of research design, such as choosing the right outcomes to study, considering the advantages and limitations of the PROMIS short forms and computer adaptive technology versions, planning ahead for a feasible data collection process, maintaining the focus on patients by ensuring that the research is truly patient-centered, and helping patients and providers make the most of PROMIS in care. The PCORI pilot projects demonstrated that PROMIS can be successfully used to conduct research that will help patients make decisions about their care. Interest in PCOR continues to grow and the lessons learned from these projects about the use of PROMIS will be helpful to investigators. Given the numerous benefits of PROMIS, implementing this tool in research and care will hopefully lead to significant progress in measuring health outcomes that are meaningful and relevant to all stakeholders.

Standardized Cardiovascular Data for Clinical Research, Registries, and Patient Care

PubMed Central

Anderson, H. Vernon; Weintraub, William S.; Radford, Martha J.; Kremers, Mark S.; Roe, Matthew T.; Shaw, Richard E.; Pinchotti, Dana M.; Tcheng, James E.

2013-01-01

Relatively little attention has been focused on standardization of data exchange in clinical research studies and patient care activities. Both are usually managed locally using separate and generally incompatible data systems at individual hospitals or clinics. In the past decade there have been nascent efforts to create data standards for clinical research and patient care data, and to some extent these are helpful in providing a degree of uniformity. Nevertheless these data standards generally have not been converted into accepted computer-based language structures that could permit reliable data exchange across computer networks. The National Cardiovascular Research Infrastructure (NCRI) project was initiated with a major objective of creating a model framework for standard data exchange in all clinical research, clinical registry, and patient care environments, including all electronic health records. The goal is complete syntactic and semantic interoperability. A Data Standards Workgroup was established to create or identify and then harmonize clinical definitions for a base set of standardized cardiovascular data elements that could be used in this network infrastructure. Recognizing the need for continuity with prior efforts, the Workgroup examined existing data standards sources. A basic set of 353 elements was selected. The NCRI staff then collaborated with the two major technical standards organizations in healthcare, the Clinical Data Interchange Standards Consortium and Health Level 7 International, as well as with staff from the National Cancer Institute Enterprise Vocabulary Services. Modeling and mapping were performed to represent (instantiate) the data elements in appropriate technical computer language structures for endorsement as an accepted data standard for public access and use. Fully implemented, these elements will facilitate clinical research, registry reporting, administrative reporting and regulatory compliance, and patient care. PMID:23500238

Knowledge Translation Research: The Science of Moving Research into Policy and Practice

ERIC Educational Resources Information Center

Curran, Janet A.; Grimshaw, Jeremy M.; Hayden, Jill A.; Campbell, Barbara

2011-01-01

Research findings will not change health outcomes unless health care organizations, systems, and professionals adopt them in practice. Knowledge translation research is the scientific study of the methods to promote the uptake of research findings by patients, health care providers, managers, and policy makers. Many forms of enquiry addressing…

An Integrative Literature Review of Patient Turnover in Inpatient Hospital Settings.

PubMed

Park, Shin Hye; Weaver, Lindsay; Mejia-Johnson, Lydia; Vukas, Rachel; Zimmerman, Julie

2016-05-01

High patient turnover can result in fragmentation of nursing care. It can also increase nursing workload and thus impede the ability of nurses to provide safe and high-quality care. We reviewed 20 studies that examined patient turnover in relation to nursing workload, staffing, and patient outcomes as well as interventions in inpatient hospital settings. The studies consistently addressed the importance of accounting for patient turnover when estimating nurse staffing needs. They also showed that patient turnover varied by time, day, and unit type. Researchers found that higher patient turnover was associated with adverse events; however, further research on this topic is needed because evidence on the effect of patient turnover on patient outcomes is not yet strong and conclusive. We suggest that researchers and administrators need to pay more attention to patterns and levels of patient turnover and implement managerial strategies to reduce nursing workload and improve patient outcomes. © The Author(s) 2015.

The patient-centered outcomes research institute should focus on high-impact problems that can be solved quickly.

PubMed

Sox, Harold

2012-10-01

The Affordable Care Act created the Patient-Centered Outcomes Research Institute (PCORI) to help patients, clinicians, and policy makers make well-informed decisions about health care. Because its funding expires in 2019, the institute has little time in which to produce timely, practice-changing results that will build public support for comparative effectiveness research. PCORI should plan its research agenda strategically, so that it addresses research questions that comparative effectiveness research could answer quickly and decisively. To date, the institute has not chosen this path. In January 2012 PCORI's first research agenda described broad research priorities rather than specific clinical questions. The institute must drive the burgeoning discipline of comparative effectiveness research forward, starting with a research project agenda that conveys a sense of urgency and strategic direction.

Uniform data collection in routine clinical practice in cardiovascular patients for optimal care, quality control and research: The Utrecht Cardiovascular Cohort.

PubMed

Asselbergs, Folkert W; Visseren, Frank Lj; Bots, Michiel L; de Borst, Gert J; Buijsrogge, Marc P; Dieleman, Jan M; van Dinther, Baukje Gf; Doevendans, Pieter A; Hoefer, Imo E; Hollander, Monika; de Jong, Pim A; Koenen, Steven V; Pasterkamp, Gerard; Ruigrok, Ynte M; van der Schouw, Yvonne T; Verhaar, Marianne C; Grobbee, Diederick E

2017-05-01

Background Cardiovascular disease remains the major contributor to morbidity and mortality. In routine care for patients with an elevated cardiovascular risk or with symptomatic cardiovascular disease information is mostly collected in an unstructured manner, making the data of limited use for structural feedback, quality control, learning and scientific research. Objective The Utrecht Cardiovascular Cohort (UCC) initiative aims to create an infrastructure for uniform registration of cardiovascular information in routine clinical practice for patients referred for cardiovascular care at the University Medical Center Utrecht, the Netherlands. This infrastructure will promote optimal care according to guidelines, continuous quality control in a learning healthcare system and creation of a research database. Methods The UCC comprises three parts. UCC-1 comprises enrolment of all eligible cardiovascular patients in whom the same information will be collected, based on the Dutch cardiovascular management guideline. A sample of UCC-1 will be invited for UCC-2. UCC-2 involves an enrichment through extensive clinical measurements with emphasis on heart failure, cerebral ischaemia, arterial aneurysms, diabetes mellitus and elevated blood pressure. UCC-3 comprises on-top studies, with in-depth measurements in smaller groups of participants typically based on dedicated project grants. All participants are followed up for morbidity and mortality through linkage with national registries. Conclusion In a multidisciplinary effort with physicians, patients and researchers the UCC sets a benchmark for a learning cardiovascular healthcare system. UCC offers an invaluable resource for future high quality care as well as for first-class research for investigators.

Patterns of Colorectal Cancer Care in Europe, Australia, and New Zealand

PubMed Central

2013-01-01

Colorectal cancer is the second most common cancer in women and the third most common in men worldwide. In this study, we used MEDLINE to conduct a systematic review of existing literature published in English between 2000 and 2010 on patterns of colorectal cancer care. Specifically, this review examined 66 studies conducted in Europe, Australia, and New Zealand to assess patterns of initial care, post-diagnostic surveillance, and end-of-life care for colorectal cancer. The majority of studies in this review reported rates of initial care, and limited research examined either post-diagnostic surveillance or end-of-life care for colorectal cancer. Older colorectal cancer patients and individuals with comorbidities generally received less surgery, chemotherapy, or radiotherapy. Patients with lower socioeconomic status were less likely to receive treatment, and variations in patterns of care were observed by patient demographic and clinical characteristics, geographical location, and hospital setting. However, there was wide variability in data collection and measures, health-care systems, patient populations, and population representativeness, making direct comparisons challenging. Future research and policy efforts should emphasize increased comparability of data systems, promote data standardization, and encourage collaboration between and within European cancer registries and administrative databases. PMID:23962509

Montreal Accord on Patient-Reported Outcomes (PROs) use series - Paper 8: patient-reported outcomes in electronic health records can inform clinical and policy decisions.

PubMed

Ahmed, Sara; Ware, Patrick; Gardner, William; Witter, James; Bingham, Clifton O; Kairy, Dahlia; Bartlett, Susan J

2017-09-01

Given that the goal of health care systems is to improve and maintain the health of the populations they serve, the indicators of performance must include outcomes that are meaningful to patients. The growth of health technologies provides an unprecedented opportunity to integrate the patient voice into clinical care by linking electronic health records (EHRs) to patient-reported outcome (PRO) data collection. However, PRO data must be relevant, meaningful, and actionable for those who will have to invest the time and effort to collect it. In this study, we highlight opportunities to integrate PRO data collection into EHRs. We consider how stakeholder perspectives should influence the selection of PROs and ways to enhance engagement in and commitment to PRO implementation. We propose a research and policy agenda to address unanswered questions and facilitate the widespread adoption of PRO data collection into EHRs. Building a learning health care system that gathers PRO data in ways that can inform individual patient care, quality improvement, and comparative effectiveness research has the potential to accelerate the application of new evidence and knowledge to patient care. Copyright © 2017 Elsevier Inc. All rights reserved.

Implementation and maintenance of patient navigation programs linking primary care with community-based health and social services: a scoping literature review.

PubMed

Valaitis, Ruta K; Carter, Nancy; Lam, Annie; Nicholl, Jennifer; Feather, Janice; Cleghorn, Laura

2017-02-06

Since the early 90s, patient navigation programs were introduced in the United States to address inequitable access to cancer care. Programs have since expanded internationally and in scope. The goals of patient navigation programs are to: a) link patients and families to primary care services, specialist care, and community-based health and social services (CBHSS); b) provide more holistic patient-centred care; and, c) identify and resolve patient barriers to care. This paper fills a gap in knowledge to reveal what is known about motivators and factors influencing implementation and maintenance of patient navigation programs in primary care that link patients to CBHSS. It also reports on outcomes from these studies to help identify gaps in research that can inform future studies. This scoping literature review involved: i) electronic database searches; ii) a web site search; iii) a search of reference lists from literature reviews; and, iv) author follow up. It included papers from Canada, the United States, the United Kingdom, Australia, New Zealand, and/or Western Europe published between January 1990 and June 2013 if they discussed navigators or navigation programs in primary care settings that linked patients to CBHSS. Of 34 papers, most originated in the United States (n = 29) while the remainder were from the United Kingdom, Canada and Australia. Motivators for initiating navigation programs were to: a) improve delivery of health and social care services; b) support and manage specific health needs or specific population needs, and; c) improve quality of life and wellbeing of patients. Eleven factors were found to influence implementation and maintenance of these patient navigation programs. These factors closely aligned with the Diffusion of Innovation in Service Organizations model, thus providing a theoretical foundation to support them. Various positive outcomes were reported for patients, providers and navigators, as well as the health and social care system, although they need to be considered with caution since the majority of studies were descriptive. This study contributes new knowledge that can inform the initiation and maintenance of primary care patient navigation programs that link patients with CBHSS. It also provides directions for future research.

Recognising and responding to 'cutting corners' when providing nursing care: a qualitative study.

PubMed

Jones, Angela; Johnstone, Megan-Jane; Duke, Maxine

2016-08-01

The aim of this study is to report on a key finding of a larger study investigating the 'gaps' in patient care that registered nurses encounter during the course of their practice. A key finding of this larger study was that 'cutting corners' was a gap discerned by nurses. 'Cutting corners' has been characterised as a 'violation' and threat to patient safety, although there is a paucity of research on this issue. Naturalistic inquiry using a qualitative exploratory descriptive approach. Data were collected from a purposeful sample of 71 registered nurses from emergency department, critical care, perioperative, rehabilitation and transitional care and neurosciences settings in Australia and analysed using content and thematic analysis strategies. Cutting corners was a common practice that encompassed (1) the partial or complete omission of patient care, (2) delays in providing care and (3) the failure to do things correctly. Corners were cut in patient assessment, essential nursing care, the care of central venous catheters and medication administration. The practice of cutting corners was perceived as contributing to preventable adverse events. The study found that cutting corners created gaps that contributed to unfinished nursing care and preventable adverse events. The findings of the study raise the possibility that cutting corners is a salient but underinvestigated characteristic of nursing practice. Further research and inquiry are needed to deepen understanding of cutting corners and its impact on patient safety. Identifying the nature and implications of cutting corners when providing nursing care is an important contributing factor to improving patient safety and quality care. © 2016 John Wiley & Sons Ltd.

Struggling to invent high-reliability organizations in health care settings: Insights from the field.

PubMed

Dixon, Nancy M; Shofer, Marjorie

2006-08-01

The Mission of the Agency for Healthcare Research and Quality (AHRQ) has been to support and conduct health services research and to disseminate those research findings. Recently the Agency has changed its mission to: "Improving the quality, safety, efficiency and effectiveness of health care for all Americans." For agency personnel working with the topic of patient safety, that change has created a need to develop greater awareness of the current patient safety initiatives underway at leading health care systems in order to determine where AHRQ might best play a role in helping these systems more rapidly adopt new practices to improve patient safety. In order to make that determination, AHRQ conducted a customer needs assessment of leaders in selected health care systems, asking them questions about their current implementation initiatives and their perceived needs for continued implementation of patient safety initiatives. Although not designed or conducted as a research study, the hour-long interviews produced rich insights into the implementation efforts of patient safety initiatives. The senior leaders interviewed in each of the health care systems, described implementing patient safety initiatives on multiple fronts-in some systems as many as 15 initiatives were underway. As the number of initiatives attests, there was no lack of knowledge about what patient safety practices should be implemented (CPOE, rapid response teams, reduction in surgical site infections) rather the major struggle these health care systems faced was the "how to" of implementation. Most initiatives were only newly begun, so these leaders were not yet confident about what they had learned from these efforts or whether they could be sustained over time. These health care systems drew many of the ideas for initiatives from outside of health care, for example, the nuclear power industry or aviation. The executives expressed concern about a number of issues including: how patient safety initiatives should be sequenced, the lack of benchmarking data to measure their systems against and the pressing need for IT standardization. The insights from this customer needs assessment revealed a wealth of implementation knowledge in the field and has led AHRQ to create an opportunity for leading edge health care systems to learn from each other via learning networks.

Building Trust: The History and Ongoing Relationships Amongst DSD Clinicians, Researchers, and Patient Advocacy Groups.

PubMed

Lossie, A C; Green, J

2015-05-01

Individuals born with differences or disorders of sex development (DSD) have been marginalized by society and the health care system. Standards of care in the mid-20(th) century were based on fixing the child with a DSD, using hormonal and surgical interventions; these treatments and the diagnoses were almost never disclosed to the child, and sometimes they were not disclosed to the parents. This led to secrecy, shame, and stigma. When these children became adults and demanded access to their medical records, the realization of the depth of secrecy led to the formation of activism groups that shook the medical community. Despite precarious beginnings, advocates, health care professionals, and researchers were able to elicit changes in the standard of care. The 2006 Consensus Statement on Management of Intersex Disorders called for a multidisciplinary approach to care and questioned the evidence for many of the standard procedures. Standard of care moved from a concealment model to a patient-centered paradigm, and funding agencies put resources into determining the future paths of research on DSD. Recognition of the need to address patient priorities led to changing international standards for including patients in research design. Some challenges that remain include: the findings from the Institute of Medicine that sexual and gender minorities experience poor health outcomes; establishing trust across all parties; developing a common language and creating venues where individuals can participate in dialogue that addresses personal experiences, research design, clinical practices and intervention strategies. © Georg Thieme Verlag KG Stuttgart · New York.

Capacity for Cancer Care Delivery Research in National Cancer Institute Community Oncology Research Program Community Practices: Availability of Radiology and Primary Care Research Partners.

PubMed

Carlos, Ruth C; Sicks, JoRean D; Chang, George J; Lyss, Alan P; Stewart, Teresa L; Sung, Lillian; Weaver, Kathryn E

2017-12-01

Cancer care spans the spectrum from screening and diagnosis through therapy and into survivorship. Delivering appropriate care requires patient transitions across multiple specialties, such as primary care, radiology, and oncology. From the program's inception, the National Cancer Institute Community Oncology Research Program (NCORP) sites were tasked with conducting cancer care delivery research (CCDR) that evaluates structural, organizational, and social factors, including care transitions that determine patient outcomes. The aim of this study is to describe the capacity of the NCORP to conduct multidisciplinary CCDR that includes radiology and primary care practices. The NCORP includes 34 community and 12 minority and underserved community sites. The Landscape Capacity Assessment was conducted in 2015 across these 46 sites, composed of the 401 components and subcomponents designated to conduct CCDR. Each respondent had the opportunity to designate an operational practice group, defined as a group of components and subcomponents with common care practices and resources. The primary outcomes were the proportion of adult oncology practice groups with affiliated radiology and primary care practices. The secondary outcomes were the proportion of those affiliated radiology and primary care groups that participate in research. Eighty-seven percent of components and subcomponents responded to at least some portion of the assessment, representing 230 practice groups. Analyzing the 201 adult oncology practice groups, 85% had affiliated radiologists, 69% of whom participate in research. Seventy-nine percent had affiliated primary care practitioners, 31% of whom participate in research. Institutional size, multidisciplinary group practice, and ownership by large regional or multistate health systems was associated with research participation by affiliated radiology and primary care groups. Research participation by these affiliated specialists was not significantly different between the community and the minority and underserved community sites. Research relationships exist between the majority of community oncology sites and affiliated radiology practices. Research relationships with affiliated primary care practices lagged. NCORP as a whole has the opportunity to encourage continued and expanded engagement where relationships exist. Where no relationship exists, the NCORP can encourage recruitment, particularly of primary care practices as partners. Copyright © 2017. Published by Elsevier Inc.

Sociodemographic Differences in Access to Care Among Hispanic Patients Who Are HIV Infected in the United States

PubMed Central

Morales, Leo S.; Cunningham, William E.; Galvan, Frank H.; Andersen, Ronald M.; Nakazono, Terry T.; Shapiro, Martin F.

2004-01-01

This study evaluated associations between sociodemographic factors and access to care, use of highly active antiretroviral therapy, and patients’ ratings of care among Hispanic patients who are HIV infected; we used data from the HIV Cost and Services Utilization Study. Gender, insurance, mode of exposure, and geographic region were associated with access to medical care. Researchers and policymakers should consider sociodemographic factors among Hispanic patients who are HIV positive when designing and prioritizing interventions to improve access to care. PMID:15226129

76 FR 42168 - Health Services Research and Development Service Merit Review Board; Notice of Meeting

Federal Register 2010, 2011, 2012, 2013, 2014

2011-07-18

... testing of new methods of health care delivery and management, and nursing research. Applications are... Management; HSR 2--Determinants of Patient Response to Care; HSR 3--Informatics and Research Methods... DEPARTMENT OF VETERANS AFFAIRS Health Services Research and Development Service Merit Review Board...

Developing a complex intervention to support timely engagement with palliative care for patients with advanced cancer in primary and secondary care in the UK: a study protocol.

PubMed

Hackett, Julia; Bekker, Hilary; Bennett, Michael I; Carder, Paul; Gallagher, Jean; Henry, Claire; Kite, Suzanne; Taylor, Sally; Velikova, Galina; Ziegler, Lucy

2018-05-14

For patients with advanced cancer, timely access to palliative care can improve quality of life and enable patients to participate in decisions about their end-of-life care. However, in a UK population of 2500 patients who died from cancer, one-third did not receive specialist palliative care, and of those who did, the duration of involvement was too short to maximise the benefits. Initiating a conversation about palliative care is challenging for some health professionals and patients often have unmet information needs and misconceptions about palliative care. We will work closely with patients and health professionals to develop a patient decision aid and health professional training module designed to facilitate a timely and informed conversation about palliative care. This study is being conducted over 24 months from November 2017 to October 2019 and follows the UK Medical Research Council framework for developing complex interventions and the International Patient Decision Aids Guideline. The Ottawa Decision Support Framework underpins the study. The Supporting Timely Engagement with Palliative care (STEP) intervention will be developed though an iterative process informed by interviews and focus groups with patients with advanced cancer, oncologists, general practitioners and palliative care doctors. An expert panel will also review each iteration. The expert panel will consist of a patient representative with experience of palliative care, health professionals who are involved in advanced cancer care decision-making, a medical education expert and the National Council for Palliative Care director of transformation. The feasibility and acceptability of the decision aid and doctor training will be tested in oncology and general practice settings. Ethical approval for the study has been granted by the Office for Research Ethics Committees Northern Ireland (ORECNI), approval reference 17/NI/0249. Dissemination and knowledge transfer will be conducted via publications, national bodies and networks, and patient and family groups. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Ethical challenges and solutions regarding delirium studies in palliative care.

PubMed

Sweet, Lisa; Adamis, Dimitrios; Meagher, David J; Davis, Daniel; Currow, David C; Bush, Shirley H; Barnes, Christopher; Hartwick, Michael; Agar, Meera; Simon, Jessica; Breitbart, William; MacDonald, Neil; Lawlor, Peter G

2014-08-01

Delirium occurs commonly in settings of palliative care (PC), in which patient vulnerability in the unique context of end-of-life care and delirium-associated impairment of decision-making capacity may together present many ethical challenges. Based on deliberations at the Studies to Understand Delirium in Palliative Care Settings (SUNDIPS) meeting and an associated literature review, this article discusses ethical issues central to the conduct of research on delirious PC patients. Together with an analysis of the ethical deliberations at the SUNDIPS meeting, we conducted a narrative literature review by key words searching of relevant databases and a subsequent hand search of initially identified articles. We also reviewed statements of relevance to delirium research in major national and international ethics guidelines. Key issues identified include the inclusion of PC patients in delirium research, capacity determination, and the mandate to respect patient autonomy and ensure maintenance of patient dignity. Proposed solutions include designing informed consent statements that are clear, concise, and free of complex phraseology; use of concise, yet accurate, capacity assessment instruments with a minimally burdensome schedule; and use of PC friendly consent models, such as facilitated, deferred, experienced, advance, and proxy models. Delirium research in PC patients must meet the common standards for such research in any setting. Certain features unique to PC establish a need for extra diligence in meeting these standards and the employment of assessments, consent procedures, and patient-family interactions that are clearly grounded on the tenets of PC. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

A new paradigm for clinical communication: critical review of literature in cancer care.

PubMed

Salmon, Peter; Young, Bridget

2017-03-01

To: (i) identify key assumptions of the scientific 'paradigm' that shapes clinical communication research and education in cancer care; (ii) show that, as general rules, these do not match patients' own priorities for communication; and (iii) suggest how the paradigm might change to reflect evidence better and thereby serve patients better. A critical review, focusing on cancer care. We identified assumptions about patients' and clinicians' roles in recent position and policy statements. We examined these in light of research evidence, focusing on inductive research that has not itself been constrained by those assumptions, and considering the institutionalised interests that the assumptions might serve. The current paradigm constructs patients simultaneously as needy (requiring clinicians' explicit emotional support) and robust (seeking information and autonomy in decision making). Evidence indicates, however, that patients generally value clinicians who emphasise expert clinical care rather than counselling, and who lead decision making. In denoting communication as a technical skill, the paradigm constructs clinicians as technicians; however, communication cannot be reduced to technical skills, and teaching clinicians 'communication skills' has not clearly benefited patients. The current paradigm is therefore defined by assumptions that that have not arisen from evidence. A paradigm for clinical communication that makes its starting point the roles that mortal illness gives patients and clinicians would emphasise patients' vulnerability and clinicians' goal-directed expertise. Attachment theory provides a knowledge base to inform both research and education. Researchers will need to be alert to political interests that seek to mould patients into 'consumers', and to professional interests that seek to add explicit psychological dimensions to clinicians' roles. New approaches to education will be needed to support clinicians' curiosity and goal-directed judgement in applying this knowledge. The test for the new paradigm will be whether the research and education it promotes benefit patients. © 2016 The Authors. Medical Education published by Association for the Study of Medical Education and John Wiley & Sons Ltd.

High Touch and High Tech (HT2) Proposal: Transforming Patient Engagement Throughout the Continuum of Care by Engaging Patients with Portal Technology at the Bedside.

PubMed

McAlearney, Ann Scheck; Sieck, Cynthia J; Hefner, Jennifer L; Aldrich, Alison M; Walker, Daniel M; Rizer, Milisa K; Moffatt-Bruce, Susan D; Huerta, Timothy R

2016-11-29

For patients with complex care needs, engagement in disease management activities is critical. Chronic illnesses touch almost every person in the United States. The costs are real, personal, and pervasive. In response, patients often seek tools to help them manage their health. Patient portals, personal health records tethered to an electronic health record, show promise as tools that patients value and that can improve health. Although patient portals currently focus on the outpatient experience, the Ohio State University Wexner Medical Center (OSUWMC) has deployed a portal designed specifically for the inpatient experience that is connected to the ambulatory patient portal available after discharge. While this inpatient technology is in active use at only one other hospital in the United States, health care facilities are currently investing in infrastructure necessary to support large-scale deployment. Times of acute crisis such as hospitalization may increase a patient's focus on his/her health. During this time, patients may be more engaged with their care and especially interested in using tools to manage their health after discharge. Evidence shows that enhanced patient self-management can lead to better control of chronic illness. Patient portals may serve as a mechanism to facilitate increased engagement. The specific aims of our study are (1) to investigate the independent effects of providing both High Tech and High Touch interventions on patient-reported outcomes at discharge, including patients' self-efficacy for managing chronic conditions and satisfaction with care; and (2) to conduct a mixed-methods analysis to determine how providing patients with access to MyChart Bedside (MCB, High Tech) and training/education on patient portals, and MyChart Ambulatory (MCA, High Touch) will influence engagement with the patient portal and relate to longer-term outcomes. Our proposed 4-year study uses a mixed-methods research (MMR) approach to evaluate a randomized controlled trial studying the effectiveness of a High Tech intervention (MCB, the inpatient portal), and an accompanying High Touch intervention (training patients to use the portal to manage their care and conditions) in a sample of hospitalized patients with two or more chronic conditions. This study measures how access to a patient portal tailored to the inpatient stay can improve patient experience and increase patient engagement by (1) improving patients' perceptions of the process of care while in the hospital; (2) increasing patients' self-efficacy for managing chronic conditions; and (3) facilitating continued use of a patient portal for care management after discharge. In addition, we aim to enhance patients' use of the portal available to outpatients (MCA) once they are discharged. This study has been funded by the Agency for Healthcare Research and Quality (AHRQ). Research is ongoing and expected to conclude in August 2019. Providing patients real-time access to health information can be a positive force for change in the way care is provided. Meaningful use policies require minimum demonstrated use of patient portal technology, most often in the ambulatory setting. However, as the technology matures to bridge the care transition, there is a greater need to understand how patient portals transform care delivery. By working in concert with patients to address and extend current technologies, our study aims to advance efforts to increase patients' engagement in their care and develop a template for how other hospitals might integrate similar technologies. ©Ann Scheck McAlearney, Cynthia J Sieck, Jennifer L Hefner, Alison M Aldrich, Daniel M Walker, Milisa K Rizer, Susan D Moffatt-Bruce, Timothy R Huerta. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 29.11.2016.

Using attachment theory in medical settings: implications for primary care physicians.

PubMed

Hooper, Lisa M; Tomek, Sara; Newman, Caroline R

2012-02-01

Mental health researchers, clinicians and clinical psychologists have long considered a good provider-patient relationship to be an important factor for positive treatment outcomes in a range of therapeutic settings. However, primary care physicians have been slow to consider how attachment theory may be used in the context of patient care in medical settings. In the current article, John Bowlby's attachment theory and proposed attachment styles are proffered as a framework to better understand patient behaviors, patient communication styles with physicians and the physician-patient relationship in medical settings. The authors recommend how primary care physicians and other health care providers can translate attachment theory to enhance practice behaviors and health-related communications in medical settings.

Pediatric oncology clinical trial participation where the geography is vast: Development of a clinical research system for tertiary and satellite centers in Ontario, Canada.

PubMed

Alexander, Sarah; Greenberg, Mark; Malkin, David; Portwine, Carol; Johnston, Donna; Silva, Mariana; Zelcer, Shayna; Sonshine, Samantha; Manzo, Janet; Bennett, Carla; Brodeur-Robb, Kathy; Deveault, Catherine; Ramachandran, Nivetha; Gibson, Paul

2018-04-01

Opportunities for participation in clinical trials are a core component of the care of children with cancer. In Ontario, many pediatric patients live long distances from their cancer center. This paper describes the work that was done in order to allow patients participating in Children's Oncology Group trials to receive care, including research protocol related care, jointly between the tertiary pediatric cancer center and the closer-to-home satellite center. The system is a pragmatic risk-based model, supporting excellence in care while ensuring good conduct of the research in compliance with applicable regulations and guidelines, including ethics oversight. © 2017 Wiley Periodicals, Inc.

Collaborative care management effectively promotes self-management: patient evaluation of care management for depression in primary care.

PubMed

DeJesus, Ramona S; Howell, Lisa; Williams, Mark; Hathaway, Julie; Vickers, Kristin S

2014-03-01

Chronic disease management in the primary care setting increasingly involves self-management support from a nurse care manager. Prior research had shown patient acceptance and willingness to work with care managers. This survey study evaluated patient-perceived satisfaction with care management and patient opinions on the effectiveness of care management in promoting self-management. Qualitative and quantitative survey responses were collected from 125 patients (79% female; average age 46; 94% Caucasian) enrolled in care management for depression. Qualitative responses were coded with methods of content analysis by 2 independent analysts. Patients were satisfied with depression care management. Patients felt that care management improved their treatment above and beyond other aspects of their depression treatment (mean score, 6.7 [SD, 2]; 10 = Very much), increased their understanding of depression self-management (mean score, 7.2 [SD, 2]; 10 = Very much), and increased the frequency of self-management goal setting (mean score, 6.9 [SD, 3]; 10 = Very much). Predominant qualitative themes emphasized that patients value emotional, motivational, and relational aspects of the care manager relationship. Patients viewed care managers as caring and supportive, helpful in creating accountability for patients and knowledgeable in the area of depression care. Care managers empower patients to take on an active role in depression self-management. Some logistical challenges associated with a telephonic intervention are described. Care manager training should include communication and motivation strategies, specifically self-management education, as these strategies are valued by patients. Barriers to care management, such as scheduling telephone calls, should be addressed in future care management implementation and study.

Developing a patient and family research advisory panel to include people with significant disease, multimorbidity and advanced age.

PubMed

Portalupi, Laura B; Lewis, Carmen L; Miller, Carl D; Whiteman-Jones, Kerry L; Sather, Kay A; Nease, Donald E; Matlock, Daniel D

2017-06-01

People who have experienced illness due to significant disease, multimorbidity and/or advanced age are high utilizers of the health care system. Yet this population has had little formal opportunity to participate in guiding the health care research agenda, and few mechanisms exist for researchers to engage this population in an efficient way. We describe the process of developing a standing patient and family advisory panel to incorporate this population's voice into research in the USA. The panel was created at the University of Colorado. Preliminary panel development consisted of a needs assessment, information gathering and participant recruitment. We collected feedback from researchers who consulted with the panel and from panel members in order to better understand the experience from the patient and family member perspective. The patient and family research advisory panel consists of eight advisors who have experience with significant disease, multimorbidity and/or advanced age, two physicians and a program manager. The panel meets every other month for 2 hours with the main purpose of advising diverse researchers on health care studies. People with significant disease, multimorbidity and/or advanced age represent a growing demographic in the USA, and their engagement in research is essential as the model of health care delivery moves from volume to value. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

The research agenda for general practice/family medicine and primary health care in Europe. Part 3. Results: person centred care, comprehensive and holistic approach.

PubMed

Van Royen, Paul; Beyer, Martin; Chevallier, Patrick; Eilat-Tsanani, Sophia; Lionis, Christos; Peremans, Lieve; Petek, Davorina; Rurik, Imre; Soler, Jean Karl; Stoffers, Henri E J H; Topsever, Pinar; Ungan, Mehmet; Hummers-Pradier, Eva

2010-06-01

The recently published 'Research Agenda for General Practice/Family Medicine and Primary Health Care in Europe' summarizes the evidence relating to the core competencies and characteristics of the Wonca Europe definition of GP/FM, and its implications for general practitioners/family doctors, researchers and policy makers. The European Journal of General Practice publishes a series of articles based on this document. In a first article, background, objectives, and methodology were discussed. In a second article, the results for the two core competencies 'primary care management' and 'community orientation' were presented. This article reflects on the three core competencies, which deal with person related aspects of GP/FM, i.e. 'person centred care', 'comprehensive approach' and 'holistic approach'. Though there is an important body of opinion papers and (non-systematic) reviews, all person related aspects remain poorly defined and researched. Validated instruments to measure these competencies are lacking. Concerning patient-centredness, most research examined patient and doctor preferences and experiences. Studies on comprehensiveness mostly focus on prevention/care of specific diseases. For all domains, there has been limited research conducted on its implications or outcomes.

Nursing Activities for Patients With Chronic Disease in Primary Care Settings: A Practice Analysis.

PubMed

Poitras, Marie-Eve; Chouinard, Maud-Christine; Gallagher, Frances; Fortin, Martin

Nurses in primary care organizations play a central role for patients with chronic disease. Lack of clarity in role description may be associated with underutilization of nurse competencies that could benefit the growing population of patients with chronic disease. The purpose of the research was to describe nursing activities in primary care settings with patients with chronic disease. A Web-based survey was sent to nurses practicing in Family Medicine Groups in the Canadian Province of Québec. Participants rated the frequency with which they carried out nursing activities in five domains: (a) global assessment, (b) care and case management, (c) health promotion, (d) nurse-physician collaboration, and (e) planning services for patients with chronic disease. Findings were summarized with descriptive statistics (means, standard deviations, and ranges). The survey was completed by 266 of the 322 nurses who received the survey (82.6%). Activities in the health promotion and global assessment of the patient domains were carried out most frequently. Planning services for patients with chronic disease were least frequently performed. This study provides a broad description of nursing activities with patients with chronic disease in primary care. The findings provide a baseline for clinicians and researchers to document and improve nursing activities for optimal practice for patients with chronic disease.

Providers' perspectives on treating psychogenic nonepileptic seizures: frustration and hope.

PubMed

McMillan, Katharine K; Pugh, Mary Jo; Hamid, Hamada; Salinsky, Martin; Pugh, Jacqueline; Noël, Polly H; Finley, Erin P; Leykum, Luci K; Lanham, Holly J; LaFrance, W Curt

2014-08-01

Recent diagnostic and treatment advances in psychogenic nonepileptic seizures (PNES) have the potential to improve care for patients, but little is known about the current state of PNES care delivery in the Veterans Health Administration (VA). We conducted semistructured interviews with 74 health-care clinicians and workers in the VA, eliciting provider perceptions of PNES care. Data were analyzed according to principles of Grounded Theory. The results revealed variation in care and two emergent domain themes of frustration and hope. Frustration was manifest in subthemes including Complexity, Patient Acceptance, Uncertainty About Treatment, Need for Evidence-based Treatment, and Failure of Cross-Disciplinary Collaboration between neurologists and mental health providers. Hope encompassed subthemes of Positive Attitudes, Developing Cross-Disciplinary Treatment, and Specific PNES Care. Increased resources for diagnosing, treating, and researching PNES have improved awareness of the disorder. More research is needed to understand patients' and caregivers' perceptions of PNES care. Copyright © 2014 Elsevier Inc. All rights reserved.

Facilitators and Barriers to Care Coordination in Patient-centered Medical Homes (PCMHs) from Coordinators’ Perspectives

PubMed Central

Friedman, Asia; Howard, Jenna; Shaw, Eric K.; Cohen, Deborah J.; Shahidi, Laleh; Ferrante, Jeanne M.

2016-01-01

Background Care coordinators are increasingly featured in patient-centered medical home (PCMH) projects, yet little research examines how coordinators themselves define and experience their role. This is the first study describing experiences of care coordinators across the US from their own perspectives. Methods This qualitative study used a 5-month private, online discussion forum to gather data from 25 care coordinators from PCMH practices representing diversity in practice size, setting, and type. Participants answered questions and interacted with one another, creating an online social learning collaborative while allowing for data collection for research. Results Coordinators identified barriers and facilitators in their work at the organization/system level, the interpersonal level, and the individual level. Some factors emerged as both barriers and facilitators, including the functionality of clinical information technology; the availability of community resources; interactions with clinicians and other health care facilities; interactions with patients; and self-care practices for mental health and wellness. Colocation and full integration into practices were other key facilitators, whereas excessive case loads and data management responsibilities were felt to be important barriers. Conclusions While all the barriers and facilitators were important to performing coordinators’ roles, relationship building materialized as key to effective care coordination, whether with clinicians, patients, or outside organizations. We discuss implications for practice and provide suggestions for further research. PMID:26769881

Diabetes Patient Tracker, a personal digital assistant-based diabetes management system for primary care practices in Oklahoma.

PubMed

Nagykaldi, Zsolt; Mold, James W

2003-01-01

It has been demonstrated that electronic patient registries combined with a clinical decision support system have a significant positive impact on the documentation and delivery of services provided by health care professionals. While implementation of available commercial systems has not always been proven effective in a number of primary care practices, development and implementation of such a system in a practice-based research network might enhance successful implementation. Physicians in our practice-based research network (Oklahoma Physicians Resource/Research Network) initiated a project that aimed at designing, testing, and implementing a personal digital assistant-based diabetes management system. We utilized the "best practice" approach to determine the principles on which the application must operate. System development and beta testing were also accomplished based on the direct feedback of user clinicians. Practice Enhancement Assistants (PEAs) were available in the practices for assistance with implementation. Implementation of the Diabetes Patient Tracker (DPT) resulted in a significant improvement (p<0.05) in nine of 10 diabetic quality of care measures compared with pre-intervention levels in 20 primary care practices. Regular PEA visits similarly increased the number of foot exams and retinal exams performed in the last year (p=0.03 and 0.02, respectively). DPT is a low-cost, feasible, easily implementable, and very effective paper-less tool that significantly improves patient care and documentation in primary care practices.

[Research in palliative care; is something better than nothing?].

PubMed

van Delden, J J M Hans

2012-01-01

How strictly should we apply the rules of good clinical research, when the research in question is performed with terminally ill patients? Recently, a retrospective study into the effectiveness of radiotherapy for sialorrhoea in patients with a degenerative disease, such as amyotrophic lateral sclerosis, was published in the Nederlands Tijdschrift voor Geneeskunde(Dutch Journal of Medicine). This commentary defends the position that in palliative care sometimes having weak scientific evidence is better than having nothing. Here, the need of the patient and the intention of the physician are 2 ethically relevant issues that need to be taken into account. If there is at least some evidence to believe an intervention is beneficial for the patient, this is a strong reason to provide it. And if such intervention can only be studied in a methodologically suboptimal way, then it is better to have that information, albeit not perfect, than none at all. This is not a justification of weak studies as such. If possible, palliative care should be as evidence-based as all other types of medical care. However, when the circumstances make methodologically perfect research impossible, it is better to act on weak evidence than on none at all.

The application of operations research methodologies to the delivery of care model for traumatic spinal cord injury: the access to care and timing project.

PubMed

Noonan, Vanessa K; Soril, Lesley; Atkins, Derek; Lewis, Rachel; Santos, Argelio; Fehlings, Michael G; Burns, Anthony S; Singh, Anoushka; Dvorak, Marcel F

2012-09-01

The long-term impact of spinal cord injury (SCI) on the health care system imposes a need for greater efficiency in the use of resources and the management of care. The Access to Care and Timing (ACT) project was developed to model the health care delivery system in Canada for patients with traumatic SCI. Techniques from Operations Research, such as simulation modeling, were used to predict the impact of best practices and policy initiatives on outcomes related to both the system and patients. These methods have been used to solve similar problems in business and engineering and may offer a unique solution to the complexities encountered in SCI care delivery. Findings from various simulated scenarios, from the patients' point of injury to community re-integration, can be used to inform decisions on optimizing practice across the care continuum. This article describes specifically the methodology and implications of producing such simulations for the care of traumatic SCI in Canada. Future publications will report on specific practices pertaining to the access to specialized services and the timing of interventions evaluated using the ACT model. Results from this type of research will provide the evidence required to support clinical decision making, inform standards of care, and provide an opportunity to engage policymakers.

The Application of Operations Research Methodologies to the Delivery of Care Model for Traumatic Spinal Cord Injury: The Access to Care and Timing Project

PubMed Central

Noonan, Vanessa K.; Soril, Lesley; Atkins, Derek; Lewis, Rachel; Santos, Argelio; Fehlings, Michael G.; Burns, Anthony S.; Singh, Anoushka

2012-01-01

Abstract The long-term impact of spinal cord injury (SCI) on the health care system imposes a need for greater efficiency in the use of resources and the management of care. The Access to Care and Timing (ACT) project was developed to model the health care delivery system in Canada for patients with traumatic SCI. Techniques from Operations Research, such as simulation modeling, were used to predict the impact of best practices and policy initiatives on outcomes related to both the system and patients. These methods have been used to solve similar problems in business and engineering and may offer a unique solution to the complexities encountered in SCI care delivery. Findings from various simulated scenarios, from the patients' point of injury to community re-integration, can be used to inform decisions on optimizing practice across the care continuum. This article describes specifically the methodology and implications of producing such simulations for the care of traumatic SCI in Canada. Future publications will report on specific practices pertaining to the access to specialized services and the timing of interventions evaluated using the ACT model. Results from this type of research will provide the evidence required to support clinical decision making, inform standards of care, and provide an opportunity to engage policymakers. PMID:22800432

Pharmaceutical care in community pharmacies: practice and research in Sweden.

PubMed

Westerlund, Lo Tommy; Björk, H Thony

2006-06-01

To describe the organization and delivery of community pharmacy and medical care, as well as pharmaceutical care practice and research, in Sweden. The Swedish retail pharmacy system of 800 community pharmacies and nearly 80 hospital pharmacies is unique in that it is organized into one single, government-owned chain, known as Apoteket AB. The pharmacy staff consists of pharmacists, prescriptionists, and pharmacy technicians. Some activities related to pharmaceutical care have been directed toward specific patient groups during annual theme campaigns. In the past few years, there has been a growing emphasis on the identification, resolution, and documentation of drug-related problems (DRPs) in Swedish pharmacy practice. A classification system for documenting DRPs and pharmacy interventions was developed in 1995 and incorporated into the software of all community pharmacies in 2001. A national DRP database (SWE-DRP) was established in 2004 to collect and analyze DRPs and interventions on a nationwide basis. Recently, a new counseling technique composed of key questions to facilitate the detection of DRPs has been tested successfully. Patient medication profiles are kept in 160 pharmacies, and a new national register of drugs dispensed to patients became available in 2006. Most pharmaceutical care studies in Sweden have focused on DRPs and resulting pharmacy interventions. Swedish community pharmacy DRP work is in the international forefront but there is a potential for further developing cognitive services, given the beneficial organization of the country's pharmacies into one single pharmacy chain. The introduction of patient medication profiles has been both late and slow and has only had a marginal effect on pharmaceutical care practice so far. The universities do not appear to have any desire to influence the practice of pharmacy and could potentially take on a more active role in preparing pharmacy students for patient-oriented services. Current threats to pharmaceutical care practice and research include organizational changes, budget cuts, and reduced manpower of Apoteket AB. The identification, resolution, and documentation of DRPs are central to community pharmacy practice in Sweden, resulting in a number of research studies. A national DRP database, patient medication profiles, and a new national register of drugs dispensed to patients provide opportunities for growth in pharmaceutical care practice and research in the country.

Health Information Research Platform (HIReP)--an architecture pattern.

PubMed

Schreiweis, Björn; Schneider, Gerd; Eichner, Theresia; Bergh, Björn; Heinze, Oliver

2014-01-01

Secondary use or single source is still far from routine in healthcare, although lots of data are available either structured or unstructured. As data are stored in multiple systems, using them for biomedical research is difficult. Clinical data warehouses already help overcoming this issue, but currently they are only used for certain parts of biomedical research. A comprehensive research platform based on a generic architecture pattern could increase the benefits of existing data warehouses for both patient care and research by meeting two objectives: serving as a so called single point-of-truth and acting as a mediator between them strengthening interaction and close collaboration. Another effect is to reduce boundaries for the implementation of data warehouses. Taking further settings into account the architecture of a clinical data warehouse supporting patient care and biomedical research needs to be integrated with biomaterial banks and other sources. This work provides a solution conceptualizing a comprehensive architecture pattern of a Health Information Research Platform (HIReP) derived from use cases of the patient care and biomedical research domain. It serves as single IT infrastructure providing solutions for any type of use case.

Data-Mining Technologies for Diabetes: A Systematic Review

PubMed Central

Marinov, Miroslav; Mosa, Abu Saleh Mohammad; Yoo, Illhoi; Boren, Suzanne Austin

2011-01-01

Background The objective of this study is to conduct a systematic review of applications of data-mining techniques in the field of diabetes research. Method We searched the MEDLINE database through PubMed. We initially identified 31 articles by the search, and selected 17 articles representing various data-mining methods used for diabetes research. Our main interest was to identify research goals, diabetes types, data sets, data-mining methods, data-mining software and technologies, and outcomes. Results The applications of data-mining techniques in the selected articles were useful for extracting valuable knowledge and generating new hypothesis for further scientific research/experimentation and improving health care for diabetes patients. The results could be used for both scientific research and real-life practice to improve the quality of health care diabetes patients. Conclusions Data mining has played an important role in diabetes research. Data mining would be a valuable asset for diabetes researchers because it can unearth hidden knowledge from a huge amount of diabetes-related data. We believe that data mining can significantly help diabetes research and ultimately improve the quality of health care for diabetes patients. PMID:22226277

Commentary: Precision science and patient-centered care.

PubMed

Clancy, Carolyn M

2011-06-01

Patient-centered outcomes research (PCOR), also known as comparative effectiveness research, offers new opportunities and challenges for academic health centers (AHCs). The author of this commentary summarizes the contributions of some of the articles in this issue that focus on PCOR, and she emphasizes the unique features of this distinctive type of research, which are longitudinal patient follow-up, the inclusion of patient-reported outcomes, and the dynamic interaction among all stakeholders throughout all phases of research.The author advocates that researchers engaged in comparative effectiveness research make every effort, and explore innovative means, to accelerate the translation of their research findings into practice. The opportunities to close the gaps between what physicians and medical scientists do and what they know, to support clinicians and patients who are working together in order to rapidly identify the best option for a unique individual, and to lead the way in addressing barriers to achieving personalized, patient-centered care should engage key members of AHCs in comparative effectiveness research, so that these institutions become a vital link connecting biomedical innovation and its precision application in diverse communities and populations.

Synthesis maps: visual knowledge translation for the CanIMPACT clinical system and patient cancer journeys.

PubMed

Jones, P H; Shakdher, S; Singh, P

2017-04-01

Salient findings and interpretations from the canimpact clinical cancer research study are visually represented in two synthesis maps for the purpose of communicating an integrated presentation of the study to clinical cancer researchers and policymakers. Synthesis maps integrate evidence and expertise into a visual narrative for knowledge translation and communication. A clinical system synthesis map represents the current Canadian primary care and cancer practice systems, proposed as a visual knowledge translation from the mixed-methods canimpact study to inform Canadian clinical research, policy, and practice discourses. Two synthesis maps, drawn together from multiple canimpact investigations and sources, were required to articulate critical differences between the clinical system and patient perspectives. The synthesis map of Canada-wide clinical cancer systems illustrates the relationships between primary care and the full cancer continuum. A patient-centred map was developed to represent the cancer (and primary care) journeys as experienced by breast and colorectal cancer patients.

Patient Safety Culture: A Review of the Nursing Home Literature and Recommendations for Practice

PubMed Central

Bonner, Alice F.; Castle, Nicholas G.; Perera, Subashan; Handler, Steven M.

2010-01-01

Patient safety culture (PSC) is a critical factor in creating high-reliability health-care organizations. Most PSC research studies to date have been conducted in acute care settings; however, nursing home studies have recently begun to appear in the literature. Nursing homes differ from hospitals in a number of ways, including the population they serve, the medical model of care, and having the vast majority of direct care provided by non-licensed certified nursing assistants. Research has shown that nursing home PSC differs in important ways from PSC in acute care institutions. Recent PSC studies conducted in nursing homes and related quality and safety research can guide recommendations for nursing homes wishing to evaluate their own PSC. Relationships between PSC measurement, quality improvement, and workforce issues are potentially important and may influence clinical outcomes. PMID:21701601

Advance care planning in a multi-cultural family-centric community: A qualitative study of healthcare professionals', patients' and caregivers' perspectives.

PubMed

Menon, Sumytra; Kars, Marijke; Malhotra, Chetna; Campbell, Alastair V; van Delden, J J M

2018-05-15

Advance care planning has been shown to improve end-of-life care but it was developed in the USA and most research has been conducted in western communities. We aimed to study the attitudes and perceptions of patients with life-limiting illnesses, informal caregivers, doctors, nurses and medical social workers regarding advance care planning in a multi-cultural family-centric community. We conducted an explorative qualitative study, using focus groups and individual in-depth interviews. We used purposive sampling techniques to recruit 61 adults (15 doctors, 13 nurses, 5 medical social workers, 15 patients and 13 caregivers) from multiple healthcare settings across the country. The participants are genuinely anxious about the implementation of advance care planning. They had positive and negative expectations of advance care planning. Many were confused about the legal framework for healthcare decision-making and expected advance care planning to be of limited value because family members, rather than the patient, were usually the key decision-makers. A nuanced approach to advance care planning which considers the family network is required in multi-cultural family centric communities. Policies should be reconciled to create a more consistent message that respects patients, the family, and is legally coherent. Further research could focus on adaptations of advance care planning to promote its acceptance in such communities. Copyright © 2018. Published by Elsevier Inc.

Systematic Review of Palliative Care in the Rural Setting.

PubMed

Bakitas, Marie A; Elk, Ronit; Astin, Meka; Ceronsky, Lyn; Clifford, Kathleen N; Dionne-Odom, J Nicholas; Emanuel, Linda L; Fink, Regina M; Kvale, Elizabeth; Levkoff, Sue; Ritchie, Christine; Smith, Thomas

2015-10-01

Many of the world's population live in rural areas. However, access and dissemination of the advances taking place in the field of palliative care to patients living in rural areas have been limited. We searched 2 large databases of the medical literature and found 248 relevant articles; we also identified another 59 articles through networking and a hand search of reference lists. Of those 307 articles, 39 met the inclusion criteria and were grouped into the following subcategories: intervention (n = 4), needs assessment (n = 2), program planning (n = 3), program evaluation (n = 4), education (n = 7), financial (n = 8), and comprehensive/systematic literature reviews (n = 11). We synthesized the current state of rural palliative care research and practice to identify important gaps for future research. Studies were conducted in the United States, Australia, Canada, Africa, Sweden, and India. Two randomized control trials were identified, both of which used telehealth approaches and had positive survival outcomes. One study demonstrated positive patient quality of life and depression outcomes. Research to guide rural palliative care practice is sparse. Approaches to telehealth, community- academic partnerships, and training rural health care professionals show promise, but more research is needed to determine best practices for providing palliative care to patients living in rural settings.

Regional Multiteam Systems in Cancer Care Delivery

PubMed Central

Monson, John R.T.; Rizvi, Irfan; Savastano, Ann; Green, James S.A.; Sevdalis, Nick

2016-01-01

Teamwork is essential for addressing many of the challenges that arise in the coordination and delivery of cancer care, especially for the problems that are presented by patients who cross geographic boundaries and enter and exit multiple health care systems at various times during their cancer care journeys. The problem of coordinating the care of patients with cancer is further complicated by the growing number of treatment options and modalities, incompatibilities among the vast variety of technology platforms that have recently been adopted by the health care industry, and competing and misaligned incentives for providers and systems. Here we examine the issue of regional care coordination in cancer through the prism of a real patient journey. This article will synthesize and elaborate on existing knowledge about coordination approaches for complex systems, in particular, in general and cancer care multidisciplinary teams; define elements of coordination derived from organizational psychology and human factors research that are applicable to team-based cancer care delivery; and suggest approaches for improving multidisciplinary team coordination in regional cancer care delivery and avenues for future research. The phenomenon of the mobile, multisystem patient represents a growing challenge in cancer care. Paradoxically, development of high-quality, high-volume centers of excellence and the ease of virtual communication and data sharing by using electronic medical records have introduced significant barriers to effective team-based cancer care. These challenges urgently require solutions. PMID:27650833

Nurses' foot care activities in home health care.

PubMed

Stolt, Minna; Suhonen, Riitta; Puukka, Pauli; Viitanen, Matti; Voutilainen, Päivi; Leino-Kilpi, Helena

2013-01-01

This study described the basic foot care activities performed by nurses and factors associated with these in the home care of older people. Data were collected from nurses (n=322) working in nine public home care agencies in Finland using the Nurses' Foot Care Activities Questionnaire (NFAQ). Data were analyzed statistically using descriptive statistics and multivariate liner models. Although some of the basic foot care activities of nurses reported using were outdated, the majority of foot care activities were consistent with recommendations in foot care literature. Longer working experience, referring patients with foot problems to a podiatrist and physiotherapist, and patient education in wart and nail care were associated with a high score for adequate foot care activities. Continuing education should focus on updating basic foot care activities and increasing the use of evidence-based foot care methods. Also, geriatric nursing research should focus in intervention research to improve the use of evidence-based basic foot care activities. Copyright © 2013 Mosby, Inc. All rights reserved.

Stakeholder engagement in diabetes self-management: patient preference for peer support and other insights.

PubMed

Kwan, Bethany M; Jortberg, Bonnie; Warman, Meredith K; Kane, Ilima; Wearner, Robyn; Koren, Romona; Carrigan, Thomas; Martinez, Vincent; Nease, Donald E

2017-06-01

Self-management support (SMS) for patients with diabetes can improve adherence to treatment, mitigate disease-related distress, and improve health outcomes. Translating this evidence into real-world practice is needed, as it is not clear which SMS models are acceptable to patients, and feasible and sustainable for primary care practices. To use the Boot Camp Translation (BCT) method to engage patient, practice, community resource and research stakeholders in translation of evidence about SMS and diabetes distress into mutually acceptable care models and to inform patient-centred outcomes research (PCOR). Twenty-seven diabetes care stakeholders, including patients and providers from a local network of federally qualified health centres participated. Stakeholders met in-person and by conference call over the course of 8 months. Subject matter experts provided education on the diabetes SMS evidence. Facilitators engaged the group in discussions about barriers to self-management and opportunities for improving delivery of SMS. BCT participants identified lack of social support, personal resources, trust, knowledge and confidence as barriers to diabetes self-management. Intervention opportunities emphasized peer support, use of multidisciplinary care teams and centralized systems for sharing information about community and practice resources. BCT informed new services and a PCOR study proposal. Patients and family engaged in diabetes care research value peer support, group visits, and multidisciplinary care teams as key features of SMS models. SMS should be tailored to an individual patient's health literacy. BCT can be used to engage multiple stakeholders in translation of evidence into practice and to inform PCOR. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Privacy concerns of patients and nurse practitioners in primary care--an APRNet study.

PubMed

Olsen, Douglas P; Dixon, Jane Karpe; Grey, Margaret; Deshefy-Longhi, Terry; Demarest, Jo Cecille

2005-12-01

This study explores and compares the privacy concerns of primary care nurse practitioners (NPs) and their patients. Privacy concerns were identified in separate focus groups of NPs and patients, and then parallel survey instruments were designed and administered to 27 NPs and 185 of their patients. All subjects were recruited through APRNet, a regional practice-based research network of NPs in southern New England encompassing 58 practices. Both groups demonstrated high levels of concern regarding privacy. While NPs and patients had similar levels of concern about most issues, there were some notable differences regarding breeches because of carelessness, disclosures for research, and which disorders require the most care in maintaining privacy. These results allow NPs to anticipate patient privacy concerns and to enhance trust in the clinical relationship. These results also indicate the need to educate patients regarding privacy rights and expectations.

Translating research findings of chronic kidney disease management to clinical practice: Challenges and opportunities.

PubMed

Stevens, Lesley Ann; Levin, Adeera

2004-01-01

Chronic Kidney disease (CKD) has been identified as a public health epidemic, fueled in part by improved outcomes of both diabetic and cardiac patient populations, as well as by the increasing recognition that it is possible to identify CKD at earlier stages. The estimated 8 to 10 million Americans that have CKD, with its concomitant morbidity and mortality, have the potential to overwhelm the current system of specialty practice medicine and health care resources. How can clinicians, clinician scientists, and health care administrators translate research findings into clinical practice in an effective manner to improve the care of this burgeoning patient group? The challenge of translating research into clinical care requires identification of that which we do and do not know, communication of knowledge between those who do and do not know, and efficient collection of information for systematic evaluation. This article will describe the challenges of translating current research findings into clinical practice. There is a need to identify the complexity of CKD disease processes and issues associated with delivery of care and to describe the difficulties in the dissemination of new knowledge to physicians. Because of the propensity of CKD to affect identifiable groups of patients, we will discuss the potential challenges of these strategies given the racial, ethnic, and cultural diversity in North America. A potential solution to these challenges is a new paradigm of "process-based medicine" that integrates clinical and basic science research findings with multidisciplinary and shared care models of health care delivery. In this context, attention to advances in information technology, the cognitive processes that underlie physician learning, and the findings of outcome research may ensure true integration of clinical research and clinical practice.

Organizational Factors Associated With Perceived Quality of Patient Care in Closed Intensive Care Units.

PubMed

McIntosh, Nathalie; Oppel, Eva; Mohr, David; Meterko, Mark

2017-09-01

Improving patient care quality in intensive care units is increasingly important as intensive care unit services account for a growing proportion of hospital services. Organizational factors associated with quality of patient care in such units have been identified; however, most were examined in isolation, making it difficult to assess the relative importance of each. Furthermore, though most intensive care units now use a closed model, little research has been done in this specific context. To examine the relative importance of organizational factors associated with patient care quality in closed intensive care units. In a national exploratory, cross-sectional study focused on intensive care units at US Veterans Health Administration acute care hospitals, unit directors were surveyed about nurse and physician staffing, work resources and training, patient care coordination, rounding, and perceptions of patient care quality. Administrative records yielded data on patient volume and facility teaching status. Descriptive statistics, bivariate analyses, and regression modeling were used for data analysis. Sixty-nine completed surveys from directors of closed intensive care units were returned. Regression model results showed that better patient care coordination (β = 0.43; P = .01) and having adequate work resources (β = 0.26; P = .02) were significantly associated with higher levels of patient care quality in such units ( R 2 = 0.22). Augmenting work resources and/or focusing limited hospital resources on improving patient care coordination may be the most productive ways to improve patient care quality in closed intensive care units. ©2017 American Association of Critical-Care Nurses.

Quality requirements for cross-border care in Europe: a qualitative study of patients’, professionals’ and healthcare financiers’ views

PubMed Central

Groene, O; Poletti, P; Vallejo, P; Cucic, C; Klazinga, N; Suñol, R

2009-01-01

Background: In the past decade the issue of patient mobility has emerged on the European health policy agenda. Although the volume of patients crossing borders to obtain healthcare is low, it is increasing continuously and, due to its legal, financial and medical implications, has generated considerable interest among health policy and other decision makers. However, there is little information available on the safety and patient-centredness of cross-border care and neither governments nor citizens have an explicit basis for comparing healthcare delivery in Europe. Methods: This study investigated the viewpoints of patients, professionals and healthcare financiers on the safety and patient-centredness of cross-border care. Qualitative interviews were carried out during 2005 and early 2006 with 40 patients, 30 professionals (doctors, nurses and managers) and 3 healthcare-financing bodies. Results: Although cross-border care has become a common issue in many European countries, there remain uncertainties on the side of each of the parties addressed—patients, professionals and financiers—with regard to the provision of cross-border care. One of the most striking results of this project is the current lack of research on systematic knowledge on the quality of cross-border care. Conclusion: Many of the issues identified through this research may have a potential impact on the quality and safety of cross-border care and will support further investigation and help shape the health policy agenda on patients crossing borders in European Union countries. PMID:19188456

Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS): Architecture

PubMed Central

Mandl, Kenneth D; Kohane, Isaac S; McFadden, Douglas; Weber, Griffin M; Natter, Marc; Mandel, Joshua; Schneeweiss, Sebastian; Weiler, Sarah; Klann, Jeffrey G; Bickel, Jonathan; Adams, William G; Ge, Yaorong; Zhou, Xiaobo; Perkins, James; Marsolo, Keith; Bernstam, Elmer; Showalter, John; Quarshie, Alexander; Ofili, Elizabeth; Hripcsak, George; Murphy, Shawn N

2014-01-01

We describe the architecture of the Patient Centered Outcomes Research Institute (PCORI) funded Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS, http://www.SCILHS.org) clinical data research network, which leverages the $48 billion dollar federal investment in health information technology (IT) to enable a queryable semantic data model across 10 health systems covering more than 8 million patients, plugging universally into the point of care, generating evidence and discovery, and thereby enabling clinician and patient participation in research during the patient encounter. Central to the success of SCILHS is development of innovative ‘apps’ to improve PCOR research methods and capacitate point of care functions such as consent, enrollment, randomization, and outreach for patient-reported outcomes. SCILHS adapts and extends an existing national research network formed on an advanced IT infrastructure built with open source, free, modular components. PMID:24821734

Patient loyalty in a mature IDS market: is population health management worth it?

PubMed

Carlin, Caroline S

2014-06-01

To understand patient loyalty to providers over time, informing effective population health management. Patient care-seeking patterns over a 6-year timeframe in Minnesota, where care systems have a significant portion of their revenue generated by shared-saving contracts with public and private payers. Weibull duration and probit models were used to examine patterns of patient attribution to a care system and the continuity of patient affiliation with a care system. Clustering of errors within family unit was used to account for within-family correlation in unobserved characteristics that affect patient loyalty. The payer provided data from health plan administrative files, matched to U.S. Census-based characteristics of the patient's neighborhood. Patients were retrospectively attributed to health care systems based on patterns of primary care. I find significant patient loyalty, with past loyalty a very strong predictor of future relationship. Relationships were shorter when the patient's health status was complex and when the patient's care system was smaller. Population health management can be beneficial to the care system making this investment, particularly for patients exhibiting prior continuity in care system choice. The results suggest that co-located primary and specialty services are important in maintaining primary care loyalty. © Health Research and Educational Trust.

Participatory methods for research prioritization in primary care: an analysis of the World Café approach in Ireland and the USA.

PubMed

MacFarlane, Anne; Galvin, Rose; O'Sullivan, Madeleine; McInerney, Chris; Meagher, Eoghan; Burke, Daniel; LeMaster, Joseph W

2017-06-01

There are increasing imperatives for patients and members of the public to engage as partners in identifying health research priorities. The use of participatory methods to engage stakeholders in health care in research prioritization is not commonly reported. This article analyses the use of World Cafés as a participatory method for research prioritization with marginalized communities in Ireland and the USA. The principles of purposeful and snowball sampling were followed in both settings and a diverse range of community and health care stakeholders participated (n = 63 Ireland and n = 55 USA). The principles for a classic World Café were employed but there were novel features in each setting as well. Stewart et al.'s (Patients' and clinicians' research priorities. Health Expect 2011; 14: 439-48, conceptual framework for patient engagement was adapted and used to comparatively analyse the strengths and weaknesses of the World Cafés, focusing on agenda setting, engagement with research processes, interactional features and outputs. Design principles for World Cafés were found to align with high-quality patient engagement for research prioritization in both settings. They served to facilitate meaningful collaboration among stakeholder groups in research prioritization (research agenda setting) and explored research priorities (engagement with research). The café ambience, emphasis on hospitality and self-facilitation created an environment for dialogues within and across participating groups (interactional features). There was a commitment to follow-up actions with reference to possible subsequent research (outputs). The World Café is a valuable, participatory, flexible method that can be used with community and health care stakeholders for research prioritization with marginalized communities. © The Author 2016. Published by Oxford University Press.

Past and next 10 years of medical informatics.

PubMed

Ückert, Frank; Ammenwerth, Elske; Dujat, Carl; Grant, Andrew; Haux, Reinhold; Hein, Andreas; Hochlehnert, Achim; Knaup-Gregori, Petra; Kulikowski, Casimir; Mantas, John; Maojo, Victor; Marschollek, Michael; Moura, Lincoln; Plischke, Maik; Röhrig, Rainer; Stausberg, Jürgen; Takabayashi, Katsuhiko; Winter, Alfred; Wolf, Klaus-Hendrik; Hasman, Arie

2014-07-01

More than 10 years ago Haux et al. tried to answer the question how health care provision will look like in the year 2013. A follow-up workshop was held in Braunschweig, Germany, for 2 days in May, 2013, with 20 invited international experts in biomedical and health informatics. Among other things it had the objectives to discuss the suggested goals and measures of 2002 and how priorities on MI research in this context should be set from the viewpoint of today. The goals from 2002 are now as up-to-date as they were then. The experts stated that the three goals: "patient-centred recording and use of medical data for cooperative care"; "process-integrated decision support through current medical knowledge" and "comprehensive use of patient data for research and health care reporting" have not been reached yet and are still relevant. A new goal for ICT in health care should be the support of patient centred personalized (individual) medicine. MI as an academic discipline carries out research concerning tools that support health care professionals in their work. This research should be carried out without the pressure that it should lead to systems that are immediately and directly accepted in practice.

Communication technology access, use, and preferences among primary care patients: from the Residency Research Network of Texas (RRNeT).

PubMed

Hill, Jason H; Burge, Sandra; Haring, Anna; Young, Richard A

2012-01-01

The digital revolution is changing the manner in which patients communicate with their health care providers, yet many patients still lack access to communication technology. We conducted this study to evaluate access to, use of, and preferences for using communication technology among a predominantly low-income patient population. We determined whether access, use, and preferences were associated with type of health insurance, sex, age, and ethnicity. In 2011, medical student researchers administered questionnaires to patients of randomly selected physicians within 9 primary care clinics in the Residency Research Network of Texas. Surveys addressed access to and use of cell phones and home computers and preferences for communicating with health care providers. In this sample of 533 patients (77% response rate), 448 (84%) owned a cell phone and 325 (62%) owned computers. Only 48% reported conducting Internet searches, sending and receiving E-mails, and looking up health information on the Internet. Older individuals, those in government sponsored insurance programs, and individuals from racial/ethnic minority groups had the lowest levels of technology adoption. In addition, more than 60% of patients preferred not to send and receive health information over the Internet, by instant messaging, or by text messaging. Many patients in this sample did not seek health information electronically nor did they want to communicate electronically with their physicians. This finding raises concerns about the vision of the patient-centered medical home to enhance the doctor-patient relationship through communication technology. Our patients represent some of the more vulnerable populations in the United States and, as such, deserve attention from health care policymakers who are promoting widespread use of communication technology.

Team-Based Palliative and End-of-Life Care for Heart Failure

PubMed Central

Fendler, Timothy J.; Swetz, Keith M.; Allen, Larry A.

2015-01-01

SYNOPSIS Clinical practice guidelines endorse the use of palliative care in patients with symptomatic heart failure. Palliative care is no longer seen as “giving up” or “accepting death,” but is now conceptualized as “supportive care” afforded to most patients with chronic, life-limiting illness. However, the optimal content and delivery of palliative care interventions remains unknown and its integration into existing heart failure disease management continues to be a challenge. Therefore, we will comment on the current state of multidisciplinary care for such patients, explore evidence supporting a team-based approach to palliative and end-of-life care for patients with heart failure, and identify high-priority areas for research. Ultimately, patients require a “heart failure medical home”, where various specialties may take a more central role in coordination of patient care at different times in the disease span, sometimes transitioning leadership from primary care to cardiology to palliative care. PMID:26142643

Working to improve the management of sarcoma patients across Europe: a policy checklist.

PubMed

Kasper, Bernd; Lecointe-Artzner, Estelle; Wait, Suzanne; Boldon, Shannon; Wilson, Roger; Gronchi, Alessandro; Valverde, Claudia; Eriksson, Mikael; Dumont, Sarah; Drove, Nora; Kanli, Athanasia; Wartenberg, Markus

2018-04-16

The Sarcoma Policy Checklist was created by a multidisciplinary expert group to provide policymakers with priority areas to improve care for sarcoma patients. This paper draws on this research, by looking more closely at how France, Germany, Italy, Spain, Sweden and the United Kingdom are addressing each of these priority areas. It aims to highlight key gaps in research, policy and practice, as well as ongoing initiatives that may impact the future care of sarcoma patients in different European countries. A pragmatic review of the published and web-based literature was undertaken. Telephone interviews were conducted in each country with clinical and patient experts to substantiate findings. Research findings were discussed within the expert group and developed into five core policy recommendations. The five identified priority areas were: the development of designated and accredited centres of reference; more professional training; multidisciplinary care; greater incentives for research and innovation; and more rapid access to effective treatments. Most of the countries studied have ongoing initiatives addressing many of these priorities; however, many are in early stages of development, or require additional funding and resources. Gaps in access to quality care are particularly concerning in many of Europe's lower-resourced countries. Equitable access to information, clinical trials, innovative treatments and quality specialist care should be available to all sarcoma patients. Achieving this across Europe will require close collaboration between all stakeholders at both the national and European level.

Cancer and serious mental illness--patient, caregiver and professional perspectives: study protocol.

PubMed

Millman, James; Galway, Karen; Santin, Olinda; Reid, Joanne

2016-01-01

To explore the experience of serious mental illness and cancer from the perspective of patients, significant others and healthcare professionals involved in their care. Serious mental illness is associated with poorer cancer outcomes. Those suffering from this comorbidity receive fewer specialist interventions and die earlier than the general population. Prior qualitative research in this area has comprised of a single study focussing on healthcare professionals and there is little evidence regarding the experiences of patients and caregivers. A qualitative exploration using approximately 36 semi-structured interviews. Semi-structured digitally recorded interviews conducted with: adults living with serious mental illness and diagnosed with cancer; those providing them with informal support and care; and healthcare professionals. Questions will focus on the experience of having cancer and serious mental illness or caring for someone with this comorbidity, experiences of healthcare and priorities for patients and carers. Framework analysis will be used. Research Ethics Committee and Trust Research & Development approval was obtained. A steering group comprising six people with experience of either cancer or mental illness provided feedback and ratified the patient information sheets and interview schedules. There is a paucity of research addressing stakeholder perspectives on the experience of cancer and of cancer services for people with serious mental illness. Dissemination of findings will inform practice relating to the care of an often neglected population, informing better support for their significant others and the professionals involved in their care. © 2015 John Wiley & Sons Ltd.

Empowering people to help speak up about safety in primary care: Using codesign to involve patients and professionals in developing new interventions for patients with multimorbidity.

PubMed

Knowles, Sarah; Hays, Rebecca; Senra, Hugo; Bower, Peter; Locock, Louise; Protheroe, Jo; Sanders, Caroline; Daker-White, Gavin

2018-04-01

Multimorbidity, defined as the presence of two or more long-term conditions, is increasingly common in primary care, and patients with multimorbidity may face particular barriers to quality of care and increased safety risks due to the complexity of managing multiple conditions. Consistent with calls to directly involve service users in improving care, we aimed to use design materials to codesign new interventions to improve safety in primary care. We drew on two established methods-accelerated experience-based codesign and the future workshop approach. We synthesized design materials based on research into the patient experience of safety and multimorbidity in primary care to enable both patients, service users and carers, and primary health-care professionals to propose interventions to improve care. Both patients and professionals prioritized polypharmacy as a threat to safety. Their recommendations for supportive interventions were consistent with Burden of Treatment theory, emphasizing the limited capacity of patients with multimorbidity and the need for services to proactively offer support to reduce the burden of managing complex treatment regimes. The process was feasible and acceptable to participants, who valued the opportunity to jointly propose new interventions. The iterative workshop approach enabled the research team to better explore and refine the suggestions of attendees. Final recommendations included the need for accessible reminders to support medication adherence and medication reviews for particularly vulnerable patients conducted with pharmacists within GP practices. © 2017 The Authors. Health Expectations published by John Wiley & Sons Ltd.

Self-care behavior of type 2 diabetes mellitus patients in Bandar Abbas in 2015.

PubMed

Karimi, Fatemeh; Abedini, Sedigheh; Mohseni, Shokrollah

2017-11-01

Diabetes self-care helps to control the blood sugar which, in turn, results in a better state of health. However, more than 50% of diabetic patients do not have self-care capabilities. To determine type 2 diabetes self-care capabilities among patients visiting a Bandar Abbas diabetes clinic in 2016. The present descriptive-analytical research was of a cross-sectional type. The sample was comprised of 120 patients afflicted with type 2 diabetes, who had been selected through the simple randomized sampling method. The data collection instrument was a questionnaire comprised of two sections: demographic information, and a summary of patients' diabetes self-care activities. A 7-point Likert scale was used for the rating. The final score would be interpreted as any of the three levels: good (acceptable) (75-100), moderate (50-74) and poor (below 50). The data entered SPSS version 18.0 for the required statistical analyses. The mean age of the sample was 51.88±10.12 years. Of the 120 subjects, 86 were female (71.7%) and 34 were male (28.3%). The findings revealed that the self-care capability of 83 subjects (69.2%) was poor; capability of 28 subjects was moderate (23.3%) and the same score of good/acceptable in 9 subjects (7.5%). The results of the present research indicate that a large number of diabetic patients have a poor self-care capability. Due to the key role of such activities in a diabetic patient's life, it is suggested to include educational programs to increase the level of self-care capabilities among these patients.

Struggling for confirmation--patients' experiences of dissatisfaction with hospital care.

PubMed

Eriksson, Ulrika; Svedlund, Marianne

2007-03-01

The aim of the study was to illuminate patients' experiences of dissatisfaction with hospital care. During the last decade, interest in measuring patient satisfaction has become an important indicator of the quality of care. Researchers have, however, criticized the concept theoretically and methodologically. Subsequently, researchers have increasingly argued that the focus of attention should shift to explore patient dissatisfaction. A qualitative approach. Narrative interviews were conducted with six people who had experienced dissatisfaction during a hospital care episode. The interview text was analysed using qualitative content analysis. The results show the patients' struggle for confirmation, the feeling of distrust in health care and what they have been forced to sacrifice because of lack of treatment. A feeling of being a troublesome patient is also apparent. At the same time a positive encounter is described, as well as situations of confirmation from caregivers. The results also show hope and a will to get on with life. Dissatisfaction relating to aspects of encounter is a common problem in health care and conceivable causes and possible solutions are discussed from different perspectives. RELEVANCE TO CLINICAL: Caregivers as well as patients are in need of confirmation. If management were to take notice of and confirm caregivers this could consequently help them to gain the strength and energy necessary to provide care permeated with confirmation. A veritable, trustworthy care can be established through personal presence. To take notice of, confirm and listen to patients, creates opportunities for providing them with a positive experience of human encounter, which in the long run is rewarding from all perspectives.

At the intersection of micro and macro: opportunities and challenges for physician-patient communication research.

PubMed

Cline, Rebecca J Welch

2003-05-01

The health care relationship model is undergoing dramatic change. Micro-level communication patterns yield health care relationship models (e.g. paternalism, mutual participation, consumerism). At the same time, macro-level systems appear increasingly likely to influence the nature of micro-level interaction. The intersections of health care communication micro-level and macro-level phenomena provide important venues for research and interventions. This essay identifies theoretical premises regarding the relationships between communication and health-related behavior; explores three prominent and growing macro-level phenomena that observers argue likely influence the physical-patient relationship and communication therein: complementary and alternative medicine, the Internet, and direct-to-consumer advertising of prescription drugs; and offers a research agenda for exploring macro-level influences on micro-level physician-patient communication.

Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation.

PubMed

de Freitas, Cláudia; Dos Reis, Vanessa; Silva, Susana; Videira, Paula A; Morava, Eva; Jaeken, Jaak

2017-09-26

Public and patient involvement in the design of people-centred care and research is vital for communities whose needs are underserved, as are people with rare diseases. Innovations devised collectively by patients, caregivers, professionals and other members of the public can foster transformative change toward more responsive services and research. However, attempts to involve lay and professional stakeholders in devising community-framed strategies to address the unmet needs of rare diseases are lacking. In this study, we engaged with the community of Congenital Disorders of Glycosylation (CDG) to assess its needs and elicit social innovations to promote people-centred care and research. Drawing on a qualitative study, we conducted three think tanks in France with a total of 48 participants, including patients/family members (n = 18), health care professionals (n = 7), researchers (n = 7) and people combining several of these roles (n = 16). Participants came from 20 countries across five continents. They were selected from the registry of the Second World Conference on CDG through heterogeneity and simple random sampling. Inductive and deductive approaches were employed to conduct interpretational analysis using open, axial and selective coding, and the constant-comparison method to facilitate the emergence of categories and core themes. The CDG community has unmet needs for information, quality health care, psychosocial support and representation in decision-making concerned with care and research. According to participants, these needs can be addressed through a range of social innovations, including peer-support communities, web-based information resources and a CDG expertise platform. This is one of the few studies to engage lay and professional experts in needs assessment and innovation for CDG at a global level. Implementing the innovations proposed by the CDG community is likely to have ethical, legal and social implications associated with the potential donation of patients' clinical and biological material that need to be assessed and regulated with involvement from all stakeholders. To promote people-centred care for the CDG community, and increase its participation in the governance of care and research, it is necessary to create participatory spaces in which the views of people affected by CDG can be fully expressed.

The Melbourne East Monash General Practice Database (MAGNET): Using data from computerised medical records to create a platform for primary care and health services research.

PubMed

Mazza, Danielle; Pearce, Christopher; Turner, Lyle Robert; De Leon-Santiago, Maria; McLeod, Adam; Ferriggi, Jason; Shearer, Marianne

2016-07-04

The Melbourne East MonAsh GeNeral PracticE DaTabase (MAGNET) research platform was launched in 2013 to provide a unique data source for primary care and health services research in Australia.  MAGNET contains information from the computerised records of 50 participating general practices and includes data from the computerised medical records of more than 1,100,000 patients.  The data extracted is patient-level episodic information and includes a variety of fields related to patient demographics and historical clinical information, along with the characteristics of the participating general practices.  While there are limitations to the data that is currently available, the MAGNET research platform continues to investigate other avenues for improving the breadth and quality of data, with the aim of providing a more comprehensive picture of primary care in Australia.

Nurses' Unique Opportunity to Promote Patient Engagement in Prenatal Care.

PubMed

Dyess-Nugent, Phyllis

2018-01-01

To report an analysis of the concept of patient engagement in prenatal care. Engagement in health care has been widely discussed but vaguely defined. Patients benefit more from their health care when they are fully engaged in their care. Patient engagement in prenatal care is an important element of prenatal care utilization that has not been analyzed, standardized as a concept, or measured. Concept analysis. CINAHL, MEDLINE, PsycINFO databases, and the internet were searched for literature published in English with a focus on peer-reviewed journals from disciplines of business, allied health sciences, health administration, psychology, and nursing, focusing on the period of 2010-2015. Hybrid version of the Walker and Avant concept analysis method (2011). This concept analysis provides 4 defining attributes of patient engagement in prenatal care and a table of related empirical referents of engagement. These elements offer a foundation for further nursing scholarship toward measurement and evaluation of patient engagement in prenatal care. Patient engagement in prenatal care represents a human response to a health condition. Efforts to increase patient engagement in health care are best addressed by the nursing profession through continued research and intervention development. © 2017 Wiley Periodicals, Inc.

An analysis of contextual information relevant to medical care unexpectedly volunteered to researchers by asthma patients

PubMed Central

Black, Heather L.; Priolo, Chantel; Gonzalez, Rodalyn; Geer, Sabrina; Adam, Bariituu; Apter, Andrea J.

2012-01-01

Objective To describe and categorize contextual information relevant to patients’ medical care unexpectedly volunteered to research personnel as part of a patient advocate intervention to facilitate access health care, communication with medical personnel, and self-management of a chronic disease like asthma. Methods We adapted a patient navigator intervention, to overcome barriers to access and communication for adults with moderate or severe asthma. Informed by focus groups of patients and providers, our Patient Advocates facilitated preparation for a visit with an asthma provider, attended the visit, confirmed understanding, and assisted with post-visit activities. During meetings with researchers, either for PA activities or data collection, participants frequently volunteered personal and medical information relevant for achieving successful self-management that was not routinely shared with medical personnel. For this project, researchers journaled information not captured by the structured questionnaires and protocol. Using a qualitative analysis, we describe 1) researchers’ journals of these unique communications, 2) their relevance for accomplishing self-management, 3) Patient Advocates’ formal activities including teach-back, advocacy, and facilitating appointment-making, and 4) observations of patients’ interactions with the clinical practices. Results In 83 journals, patients’ social support (83%), health (68%), and deportment (69%) were described. Patient Advocate assistance with navigating the medical system (59%), teach-back (46%), and observed interactions with patient and medical staff (76%) were also journaled. Implicit were ways patients and practices could overcome barriers to access and communication. Conclusions These journals describe the importance of seeking contextual and medically relevant information from all patients and especially those with significant morbidities, prompting patients for barriers to accessing care, and confirming understanding of medical information. PMID:22788543

The utilization of knowledge of and interest in research and development among primary care staff by means of strategic communication - a staff cohort study.

PubMed

Morténius, Helena; Marklund, Bertil; Palm, Lars; Fridlund, Bengt; Baigi, Amir

2012-08-01

The obvious gap between evidence and practice in health care is unfavourable for patient care and requires the promotion of a scientific attitude among health care professionals. The aim of the present study was to determine the utilization of knowledge of and interest in research and development among primary care staff by means of a strategic communication process. A cohort consisting of primary care staff (n = 1276) was designed and strategic communication was utilized as a platform over a 7-year period. Quantitative and qualitative methods were taken in account. We found that 97% of the staff had gained knowledge of research and development, 60% of whom remained interested in the subject. The oral communication channel was the most powerful for creating research interest. Organizational culture was a barrier to interest in science. The study demonstrates a significant increase in knowledge and interest among primary care staff as a result of a strategic communication process. Strategic communication should lead to a more evenly distributed research commitment among all health care professionals, thus facilitating communication between them and patients in order to clarify, for example, the causes of disease. © 2011 Blackwell Publishing Ltd.

The holistic nursing care of patients with minor injuries attending the A&E department.

PubMed

Olive, Philippa

2003-01-01

Philosophy, theoretical frameworks, and concepts of nursing are applied to the particular context of accident and emergency nursing. From this the research question evolves; the researcher seeks to explore the accident and emergency nurses' perceptions of the concept of holistic nursing care, a concept that is included within their department's philosophy for nursing. An ethnographic approach is applied to the research to gather rich descriptive data through exploratory interviews. The data were collected and analysed simultaneously, categories of data were developed, and these are presented here in the findings. The categories were scrutinised for patterns, similarities, and dissimilarities between the data; recurrent themes emerge. These themes shed light upon the meanings of holism in care to the respondents and offer an understanding of their cultural systems that affect the provision of holistic nursing care, these are discussed and analysed within the contexts of the existing knowledge base. The study identifies issues that adversely affect the provision of holistic nursing care, notably fragmentation of care, dissemination of nursing information, and privacy. The implications for practice are discussed, and recommendations include action research for practical issues and further research into the provision of holistic nursing care incorporating the perceptions of patients who receive care in this setting.

The 2016 Academic Emergency Medicine Consensus Conference, Shared Decision Making in the Emergency Department: Development of a Policy-relevant Patient-centered Research Agenda May 10, 2016, New Orleans, LA.

PubMed

Grudzen, Corita R; Anderson, Jana R; Carpenter, Christopher R; Hess, Erik P

2016-12-01

Shared decision making in emergency medicine has the potential to improve the quality, safety, and outcomes of emergency department (ED) patients. Given that the ED is the gateway to care for patients with a variety of illnesses and injuries and the safety net for patients otherwise unable to access care, shared decision making in the ED is relevant to numerous disciplines and the interests of the United States (U.S.) public. On May 10, 2016 the 16th annual Academic Emergency Medicine (AEM) consensus conference, "Shared Decision Making: Development of a Policy-Relevant Patient-Centered Research Agenda" was held in New Orleans, Louisiana. During this one-day conference clinicians, researchers, policy-makers, patient and caregiver representatives, funding agency representatives, trainees, and content experts across many areas of medicine interacted to define high priority areas for research in 1 of 6 domains: 1) diagnostic testing; 2) policy, 3) dissemination/implementation and education, 4) development and testing of shared decision making approaches and tools in practice, 5) palliative care and geriatrics, and 6) vulnerable populations and limited health literacy. This manuscript describes the current state of shared decision making in the ED context, provides an overview of the conference planning process, the aims of the conference, the focus of each respective breakout session, the roles of patient and caregiver representatives and an overview of the conference agenda. The results of this conference published in this issue of AEM provide an essential summary of the future research priorities for shared decision making to increase quality of care and patient-centered outcomes. © 2016 by the Society for Academic Emergency Medicine.

Policy versus practice: a community-based qualitative study of the realities of pharmacy services in Nunavut, Canada.

PubMed

Romain, Sandra J; Kohler, Jillian C; Young, Kue

2015-01-01

Nunavut is an Arctic territory in Canada subject to many social, economic and health disparities in comparison to the rest of the nation. The territory is affected by health care provision challenges caused by small, geographically isolated communities where staffing shortages and weather related access barriers are common concerns. In addition to national universal healthcare, the majority of the inhabitants of Nunavut (~85 %) are Inuit beneficiaries of no-charge pharmaceuticals provided through federal and/or territorial budgetary allocations. This research examines how existing pharmaceutical administration and distribution policies and practices in Nunavut impact patient care. This grounded theory research includes document analysis and semi-structured interviews conducted in 2013/14 with patients, health care providers, administrators and policy makers in several communities in Nunavut. Thirty five informants in total participated in the study. Interviews were audiotaped, transcribed and analyzed with qualitative data analysis software for internal consistency and emerging themes. Four distinct themes emerge from the research that have the potential to impact patient care and which may provide direction for future policy development: 1) tensions between national versus territorial financial responsibilities influence health provider decisions that may affect patient care, 2) significant human resources are utilized in Community Health Centres to perform distribution duties associated with retail pharmacy medications, 3) large quantities of unclaimed prescription medications are suggestive of significant financial losses, suboptimal patient care and low adherence rates, and 4) the absence of a clear policy and oversight for some controlled substances, such as narcotics, leaves communities at risk for potential illegal procurement or abuse. Addressing these issues in future policy development may result in system-wide economic benefits, improved patient care and adherence, and reduced risk to communities. The interview informants who participated in this research are best positioned to identify issues in need of attention and will benefit the most from policy development to address their concerns.

Life on Facebook: self-care in renal transplantation patients.

PubMed

Roso, Camila Castro; Kruse, Maria Henriqueta Luce

2017-07-06

To analyze self-care in renal transplantation patients. Qualitative research, inspired in the post-structuralism. The empirical material was composed by the posts of a Facebook group of Renal Transplantation Patients, collected from February to May of 2016, totaling 53 posts from 35 participants. The research data were analyzed under the perspective of cultural analysis, using theories derived from Foucault. Self-care in renal transplantation patients was identified by the preoccupation with themselves and others, habits and lifestyles, restrictions and limitations that the disease imposes, such as lessons, ways of living and lifestyles after the procedure. This experience forces people that have been submitted to renal transplantation to reflect on the lifestyle they follow. The group also stimulates adhesion to treatment.

Patients' perception of types of errors in palliative care - results from a qualitative interview study.

PubMed

Kiesewetter, Isabel; Schulz, Christian; Bausewein, Claudia; Fountain, Rita; Schmitz, Andrea

2016-08-11

Medical errors have been recognized as a relevant public health concern and research efforts to improve patient safety have increased. In palliative care, however, studies on errors are rare and mainly focus on quantitative measures. We aimed to explore how palliative care patients perceive and think about errors in palliative care and to generate an understanding of patients' perception of errors in that specialty. A semistructured qualitative interview study was conducted with patients who had received at least 1 week of palliative care in an inpatient or outpatient setting. All interviews were transcribed verbatim and analysed according to qualitative content analysis. Twelve patients from two centers were interviewed (7 women, median age 63.5 years, range 22-90 years). Eleven patients suffered from a malignancy. Days in palliative care ranged from 10 to 180 days (median 28 days). 96 categories emerged which were summed up under 11 umbrella terms definition, difference, type, cause, consequence, meaning, recognition, handling, prevention, person causing and affected person. A deductive model was developed assigning umbrella terms to error-theory-based factor levels (definition, type and process-related factors). 23 categories for type of error were identified, including 12 categories that can be considered as palliative care specific. On the level of process-related factors 3 palliative care specific categories emerged (recognition, meaning and consequence of errors). From the patients' perspective, there are some aspects of errors that could be considered as specific to palliative care. As the results of our study suggest, these palliative care-specific aspects seem to be very important from the patients' point of view and should receive further investigation. Moreover, the findings of this study can serve as a guide to further assess single aspects or categories of errors in palliative care in future research.

Research traditions in provider-consumer interaction: implications for cancer care.

PubMed

O'Hair, Dan

2003-05-01

The increasing importance of communication in cancer research should play a role in shaping the research agendas of those interested in investigations involving providers and consumers of cancer care. The goal of this article is to identify existing programs of research specific to provider-patient relationships and infer implications for how these research traditions can lead to important research avenues in the cancer context. Research programs reviewed in this article include (a) relational control messages and (b) patient preferences for communication style. Each section briefly reviews some noteworthy trends emanating from that research tradition and concludes with implications for future research. In the final section, two promising directions of research are proposed for consumer-provider communication.

Dignity-conserving care actions in palliative care: an integrative review of Swedish research.

PubMed

Harstäde, Carina Werkander; Blomberg, Karin; Benzein, Eva; Östlund, Ulrika

2018-03-01

Previous research has proposed that persons in need of palliative care often have a loss of functions and roles that affects social and existential self-image. Moreover, these individuals also commonly suffer from complex multisymptoms. This, together with the situation of facing an impending death, can lead to a loss of dignity. Therefore, supporting these persons' dignity is a crucial challenge for professional nurses. The 'Dignity Care Intervention' addresses the multidimensionality of dignity by identifying patients' dignity-related concerns and suggests care actions to address them. At the present, the Dignity Care Intervention is adapted for implementation in Swedish care settings. Because expressions of dignity are influenced by culture, and an overview of care actions in a Swedish context is lacking, this integrative review aimed to find suggestions from Swedish research literature on what kind of care actions can preserve dignity. An integrative literature review was conducted using the databases SwePub and SweMed+. Articles published from 2006 to 2015 and theses published from 2000 to 2015 were searched for using the terms 'dignity' and 'palliative care'. Result sections of articles and theses were reviewed for dignity-conserving care actions synthesised by thematic analysis and categorised under themes and subthemes in Chochinov's model of dignity. Fifteen articles and 18 theses were included together providing suggestions of care actions in all themes and subthemes in the dignity model. Suggested care actions included listening, communication, information, symptom control, facilitating daily living and including patients in decision-making. Additionally, nurses' perceptiveness towards the patients was a core approach. The review offers culturally relevant suggestions on how to address specific dignity-related concerns. The adapted Dignity Care Intervention will be a way for Swedish nurses to provide person-centred palliative care that will conserve patients' dignity. © 2017 Nordic College of Caring Science.

The Affordable Care Act and Cancer Care Delivery

PubMed Central

Brooks, Gabriel A.; Hoverman, J. Russell; Colla, Carrie H.

2017-01-01

The Affordable Care Act (ACA) has reformed U.S. health care delivery through insurance coverage expansion, experiments in payment design, and funding for patient-centered clinical and health care delivery research. The impact on cancer care specifically has been far-reaching, with new ACA-related programs that encourage coordinated, patient-centered, cost-effective care. Insurance expansions through private exchanges and Medicaid, along with pre-existing condition clauses, have helped over 20 million Americans gain health care coverage. Accountable care organizations, oncology patient-centered medical homes and the Oncology Care Model—all implemented through the Center for Medicare and Medicaid Innovation—have initiated an accelerating shift toward value-based cancer care. Concurrently, evidence for better cancer outcomes and improved quality of cancer care is starting to accrue in the wake of ACA implementation. PMID:28537961

Examining differences in characteristics between patients receiving primary care from nurse practitioners or physicians using Medicare Current Beneficiary Survey data and Medicare claims data.

PubMed

Loresto, Figaro L; Jupiter, Daniel; Kuo, Yong-Fang

2017-06-01

Few studies have examined differences in functional, cognitive, and psychological factors between patients utilizing only nurse practitioners (NPs) and those utilizing only primary care medical doctors (PCMDs) for primary care. Patients utilizing NP-only or PCMD-only models for primary care will be characterized and compared in terms of functional, cognitive, and psychological factors. Cohorts were obtained from the Medicare Current Beneficiary Survey linked to Medicare claims data. Weighted analysis was conducted to compare the patients within the two care models in terms of functional, cognitive, and psychological factors. From 2007 to 2013, there was a 170% increase in patients utilizing only NPs for primary care. In terms of health status, patients utilizing only NPs in their primary care were not statistically different from patients utilizing only PCMDs. There is a perception that NPs, as compared with PCMDs, tend to provide care to healthier patients. Our results are contrary to this perception. In terms of health status, NP-only patients are similar to PCMD-only patients. Results of this study may inform research comparing NP-only care and PCMD-only care using Medicare and the utilization of NPs in primary care. ©2017 American Association of Nurse Practitioners.

Interprofessional collaborative patient-centred care: a critical exploration of two related discourses.

PubMed

Fox, Ann; Reeves, Scott

2015-03-01

There has been sustained international interest from health care policy makers, practitioners, and researchers in developing interprofessional approaches to delivering patient-centred care. In this paper, we offer a critical exploration of a selection of professional discourses related to these practice paradigms, including interprofessional collaboration, patient-centred care, and the combination of the two. We argue that for some groups of patients, inequalities between different health and social care professions and between professionals and patients challenge the successful realization of the positive aims associated with these discourses. Specifically, we argue that interprofessional and professional-patient hierarchies raise a number of key questions about the nature of professions, their relationships with one another as well as their relationship with patients. We explore how the focus on interprofessional collaboration and patient-centred care have the potential to reinforce a patient compliance model by shifting responsibility to patients to do the "right thing" and by extending the reach of medical power across other groups of professionals. Our goal is to stimulate debate that leads to enhanced practice opportunities for health professionals and improved care for patients.

Electronic Patient Registries Improve Diabetes Care and Clinical Outcomes in Rural Community Health Centers

ERIC Educational Resources Information Center

Pollard, Cecil; Bailey, Kelly A.; Petitte, Trisha; Baus, Adam; Swim, Mary; Hendryx, Michael

2009-01-01

Context: Diabetes care is challenging in rural areas. Research has shown that the utilization of electronic patient registries improves care; however, improvements generally have been described in combination with other ongoing interventions. The level of basic registry utilization sufficient for positive change is unknown. Purpose: The goal of…

Brief Alcohol Interventions and Multiple Risk Factors in Primary Care

ERIC Educational Resources Information Center

Funderburk, Jennifer S.; Maisto, Stephen A.; Sugarman, Dawn E.

2007-01-01

Early identification and intervention of harmful/hazardous drinking in primary care are U.S. healthcare priorities. Traditionally, research has focused on designing interventions for patients in primary care who report hazardous/harmful alcohol use, even though it is likely for a patient to be at risk for multiple problems. This article has three…

Clinical Pathways: Recommendations for Putting Patients at the Center of Value-Based Care.

PubMed

Abrahams, Edward; Balch, Alan; Goldsmith, Patricia; Kean, Marcia; Miller, Amy M; Omenn, Gilbert; Sonet, Ellen; Sprandio, John; Tyne, Courtney; Westrich, Kimberly

2017-08-15

Two major trends that have been affecting the provision of oncology care in the United States are a shift from volume-based to value-based care and a push toward patient-centered healthcare. However, these two trends are not always completely aligned with each other. Value-based payment models, including clinical pathways, are one strategy being implemented by oncology stakeholders to help encourage the uptake of value-based oncology care. If structured with the patient in mind, they can improve quality of care for patients with cancer, decrease inappropriate care while enabling appropriate personalization of care, and constrain rising prices by demanding a stronger link between cost and value. If not structured appropriately, they can limit patient choice, impede access to innovative treatments, and encourage one-size-fits-all oncology care. Clin Cancer Res; 23(16); 4545-9. ©2017 AACR . ©2017 American Association for Cancer Research.

Patient- and family-centered care of children in the emergency department.

PubMed

O'Malley, Patricia J; Brown, Kathleen; Krug, Steven E

2008-08-01

Patient- and family-centered care is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in a mutually beneficial partnership among patients, families, and health care professionals. Providing patient- and family-centered care to children in the emergency department setting presents many opportunities and challenges. This technical report draws on previously published policy statements and reports, reviews the current literature, and describes the present state of practice and research regarding patient- and family-centered care for children in the emergency department setting as well as some of the complexities of providing such care. This technical report has been endorsed by the Academic Pediatric Association (formerly the Ambulatory Pediatric Association), the American College of Osteopathic Emergency Physicians, the National Association of Emergency Medical Technicians, the Institute for Family-Centered Care, and the American College of Emergency Physicians. This report is also supported by the Emergency Nurses Association.

Contribution of transpersonal care to cardiac patients in the postoperative period of heart surgery.

PubMed

Rabelo, Ana Cleide Silva; Souza, Fabíola Vládia Feire Silva; Silva, Lúcia de Fátima da

2018-06-07

To know the contribution of Watson's theory to nursing care for cardiac patients in the postoperative period of cardiac surgery. This is a qualitative study based on the research-care method conducted with ten patients who underwent cardiac surgery in a specialised hospital from June to August 2013, in the city of Fortaleza, Ceará, Brazil. Data were submitted to content analysis based on the Clinical Caritas Process. The results led to four thematic categories: Awareness of being cared for by another being, System of beliefs and subjectivity, Relation of support and trust, and Expression of feelings. Surgery transformed the lives of the patients related to the process of being cared for by other people. The application of Watson's theory to care for cardiac patients after heart surgery shed valuable light on the importance of transpersonal care for the expansion of nursing care.

Supplementing electronic health records through sample collection and patient diaries: A study set within a primary care research database.

PubMed

Joseph, Rebecca M; Soames, Jamie; Wright, Mark; Sultana, Kirin; van Staa, Tjeerd P; Dixon, William G

2018-02-01

To describe a novel observational study that supplemented primary care electronic health record (EHR) data with sample collection and patient diaries. The study was set in primary care in England. A list of 3974 potentially eligible patients was compiled using data from the Clinical Practice Research Datalink. Interested general practices opted into the study then confirmed patient suitability and sent out postal invitations. Participants completed a drug-use diary and provided saliva samples to the research team to combine with EHR data. Of 252 practices contacted to participate, 66 (26%) mailed invitations to patients. Of the 3974 potentially eligible patients, 859 (22%) were at participating practices, and 526 (13%) were sent invitations. Of those invited, 117 (22%) consented to participate of whom 86 (74%) completed the study. We have confirmed the feasibility of supplementing EHR with data collected directly from patients. Although the present study successfully collected essential data from patients, it also underlined the requirement for improved engagement with both patients and general practitioners to support similar studies. © 2017 The Authors. Pharmacoepidemiology & Drug Safety published by John Wiley & Sons Ltd.

[New image of home nursing created by point of care testing (POCT) - examination of issues in the introduction of POCT].

PubMed

Hata, Kiyomi

2014-12-01

With the rising number of patients who rely on medical care, it is necessary to use evolving health care technology appropriately, to control health care costs, and to enhance the well-being of patients in the home care setting. Point of care testing (POCT)is instrumental system for such demands for home care; however, this term remains relatively unknown in Japan. For this research, I conducted a qualitative analysis of factors based on stories obtained through group interviews of 11 experienced home visiting nurses who work at three home-visit nursing stations for the purpose of clarifying issues in the introduction of POCT. The results of the research identified five categories and 16 subcategories for issues in the introduction of POCT. The identified categories are expected to be useful for the spread of POCT in the future. Key words: Point of care testing, Home care nursing.

Recent advances in multidisciplinary critical care.

PubMed

Blot, Stijn; Afonso, Elsa; Labeau, Sonia

2015-01-01

The intensive care unit is a work environment where superior dedication is crucial for optimizing patients' outcomes. As this demanding commitment is multidisciplinary in nature, it requires special qualities of health care workers and organizations. Thus research in the field covers a broad spectrum of activities necessary to deliver cutting-edge care. However, given the numerous research articles and education activities available, it is difficult for modern critical care clinicians to keep up with the latest progress and innovation in the field. This article broadly summarizes new developments in multidisciplinary intensive care. It provides elementary information about advanced insights in the field via brief descriptions of selected articles grouped by specific topics. Issues considered include care for heart patients, mechanical ventilation, delirium, nutrition, pressure ulcers, early mobility, infection prevention, transplantation and organ donation, care for caregivers, and family matters. ©2015 American Association of Critical-Care Nurses.

Patients' Need for Tailored Comparative Health Care Information: A Qualitative Study on Choosing a Hospital.

PubMed

Zwijnenberg, Nicolien C; Hendriks, Michelle; Bloemendal, Evelien; Damman, Olga C; de Jong, Judith D; Delnoij, Diana Mj; Rademakers, Jany Jd

2016-11-28

The Internet is increasingly being used to provide patients with information about the quality of care of different health care providers. Although online comparative health care information is widely available internationally, and patients have been shown to be interested in this information, its effect on patients' decision making is still limited. This study aimed to explore patients' preferences regarding information presentation and their values concerning tailored comparative health care information. Meeting patients' information presentation needs might increase the perceived relevance and use of the information. A total of 38 people participated in 4 focus groups. Comparative health care information about hip and knee replacement surgery was used as a case example. One part of the interview focused on patients' information presentation preferences, whereas the other part focused on patients' values of tailored information (ie, showing reviews of patients with comparable demographics). The qualitative data were transcribed verbatim and analyzed using the constant comparative method. The following themes were deduced from the transcripts: number of health care providers to be presented, order in which providers are presented, relevancy of tailoring patient reviews, and concerns about tailoring. Participants' preferences differed concerning how many and in which order health care providers must be presented. Most participants had no interest in patient reviews that were shown for specific subgroups based on age, gender, or ethnicity. Concerns of tailoring were related to the representativeness of results and the complexity of information. A need for information about the medical specialist when choosing a hospital was stressed by several participants. The preferences for how comparative health care information should be presented differ between people. "Information on demand" and information about the medical specialist might be promising ways to increase the relevancy and use of online comparative health care information. Future research should focus on how different groups of people use comparative health care information for different health care choices in real life. ©Nicolien C Zwijnenberg, Michelle Hendriks, Evelien Bloemendal, Olga C Damman, Judith D de Jong, Diana MJ Delnoij, Jany JD Rademakers. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 28.11.2016.

Integrating Depression Care Management into Medicare Home Health Reduces Risk of 30 and 60 Day Hospitalization: The Depression CAREPATH Cluster-Randomized Trial

PubMed Central

Bruce, Martha L.; Lohman, Matthew C.; Greenberg, Rebecca L.; Bao, Yuhua; Raue, Patrick J.

2016-01-01

OBJECTIVES To determine whether a depression care management intervention among Medicare home health recipients decreases risks of hospitalization. DESIGN Cluster-randomized trial. Nurse teams were randomized to Intervention (12 teams) or Enhanced Usual Care (EUC; 9 teams). SETTING Six home health agencies from distinct geographic regions. Patients were interviewed at home and by telephone. PARTICIPANTS Patients age>65 who screened positive for depression on nurse assessments (N=755), and a subset who consented to interviews (N=306). INTERVENTION The Depression CAREPATH (CARE for PATients at Home) guides nurses in managing depression during routine home visits. Clinical functions include weekly symptom assessment, medication management, care coordination, patient education, and goal setting. Researchers conducted biweekly telephone conferences with team supervisors. MEASUREMENTS The study examined acute-care hospitalization and days to hospitalization. H1 used data from the home health record to examine hospitalization over 30-day and 60-day periods while a home health patient. H2 used data from both home care record and research assessments to examine 30-day hospitalization from any setting. RESULTS The adjusted hazard ratio (HR) of being admitted to hospital directly from home health within 30 days of start of home health care was 0.65 (p=.013) for CAREPATH compared to EUC patients, and 0.72 (p=.027) within 60 days. In patients referred to home health directly from hospital, the relative hazard of being rehospitalized was approximately 55% lower (HR = 0.45, p=.001) among CAREPATH patients. CONCLUSION Integrating CAREPATH depression care management into routine nursing practice reduces hospitalization and rehospitalization risk among older adults receiving Medicare home health nursing services. PMID:27739067

Enhancing adult therapeutic interpersonal relationships in the acute health care setting: an integrative review.

PubMed

Kornhaber, Rachel; Walsh, Kenneth; Duff, Jed; Walker, Kim

2016-01-01

Therapeutic interpersonal relationships are the primary component of all health care interactions that facilitate the development of positive clinician-patient experiences. Therapeutic interpersonal relationships have the capacity to transform and enrich the patients' experiences. Consequently, with an increasing necessity to focus on patient-centered care, it is imperative for health care professionals to therapeutically engage with patients to improve health-related outcomes. Studies were identified through an electronic search, using the PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsycINFO databases of peer-reviewed research, limited to the English language with search terms developed to reflect therapeutic interpersonal relationships between health care professionals and patients in the acute care setting. This study found that therapeutic listening, responding to patient emotions and unmet needs, and patient centeredness were key characteristics of strategies for improving therapeutic interpersonal relationships.

Patients With Brain Tumors: Who Receives Postacute Occupational Therapy Services?

PubMed

Chan, Vincy; Xiong, Chen; Colantonio, Angela

2015-01-01

Data on the utilization of occupational therapy among patients with brain tumors have been limited to those with malignant tumors and small samples of patients outside North America in specialized palliative care settings. We built on this research by examining the characteristics of patients with brain tumors who received postacute occupational therapy services in Ontario, Canada, using health care administrative data. Between fiscal years 2004-2005 and 2008-2009, 3,199 patients with brain tumors received occupational therapy services in the home care setting after hospital discharge; 12.4% had benign brain tumors, 78.2% had malignant brain tumors, and 9.4% had unspecified brain tumors. However, patients with benign brain tumors were older (mean age=63.3 yr), and a higher percentage were female (65.2%). More than 90% of patients received in-home occupational therapy services. Additional research is needed to examine the significance of these differences and to identify factors that influence access to occupational therapy services in the home care setting. Copyright © 2015 by the American Occupational Therapy Association, Inc.

The Teamwork Study: enhancing the role of non-GP staff in chronic disease management in general practice.

PubMed

Black, D A; Taggart, J; Jayasinghe, U W; Proudfoot, J; Crookes, P; Beilby, J; Powell-Davis, G; Wilson, L A; Harris, M F

2013-01-01

There is evidence for a team-based approach in the management of chronic disease in primary health care. However, the standard of care is variable, probably reflecting the limited organisational capacity of health services to provide the necessary structured and organised care for this group of patients. This study aimed to evaluate the impact of a structured intervention involving non-GP staff in GP practices on the quality of care for patients with diabetes or cardiovascular disease. A cluster randomised trial was undertaken across 60 GP practices. The intervention was implemented in 30 practices with staff and patients interviewed at baseline and at 12-15 months follow up. The change in team roles was evaluated using a questionnaire completed by practice staff. The quality of care was evaluated using the Patient Assessment of Chronic Illness Care questionnaire. We found that although the team roles of staff improved in the intervention practices and there were significant differences between practices, there was no significant difference between those in the intervention and control groups in patient-assessed quality of care after adjusting for baseline-level score and covariates at the 12-month follow up. Practice team roles were not significantly associated with change in Patient Assessment of Chronic Illness Care scores. Patients with multiple conditions were more likely to assess their quality of care to be better. Thus, although previous research has shown a cross-sectional association between team work and quality of care, we were unable to replicate these findings in the present study. These results may be indicative of insufficient time for organisational change to result in improved patient-assessed quality of care, or because non-GP staff roles were not sufficiently focussed on the aspects of care assessed. The findings provide important information for researchers when designing similar studies.

User Interfaces for Patient-Centered Communication of Health Status and Care Progress

ERIC Educational Resources Information Center

Wilcox-Patterson, Lauren

2013-01-01

The recent trend toward patients participating in their own healthcare has opened up numerous opportunities for computing research. This dissertation focuses on how technology can foster this participation, through user interfaces to effectively communicate personal health status and care progress to hospital patients. I first characterize the…

Patient-centered care and its effect on outcomes in the treatment of asthma

PubMed Central

Qamar, Nashmia; Pappalardo, Andrea A; Arora, Vineet M; Press, Valerie G

2011-01-01

Patient-centered care may be pivotal in improving health outcomes for patients with asthma. In addition to increased attention in both research and clinical forums, recent legislation also highlights the importance of patient-centered outcomes research in the Patient Protection and Affordable Care Act. However, whether patient-centered care has been shown to improve outcomes for this population is unclear. To answer this question, we performed a systematic review of the literature that aimed to define current patient-focused management issues, characterize important patient-defined outcomes in asthma control, and identify current and emerging treatments related to patient outcomes and perspectives. We used a parallel search strategy via Medline®, Cochrane Central Register of Controlled Trials, CINAHL® (Cumulative Index to Nursing and Allied Health Literature), and PsycINFO®, complemented with a reference review of key articles that resulted in a total of 133 articles; 58 were interventions that evaluated the effect on patient-centered outcomes, and 75 were descriptive studies. The majority of intervention studies demonstrated improved patient outcomes (44; “positive” results); none showed true harm (0; “negative”); and the remainder were equivocal (14; “neutral”). Key themes emerged relating to patients’ desires for asthma knowledge, preferences for tailored management plans, and simplification of treatment regimens. We also found discordance between physicians and patients regarding patients’ needs, beliefs, and expectations about asthma. Although some studies show promise regarding the benefits of patient-focused care, these methods require additional study on feasibility and strategies for implementation in real world settings. Further, it is imperative that future studies must be, themselves, patient-centered (eg, pragmatic comparative effectiveness studies) and applicable to a variety of patient populations and settings. Despite the need for further research, enough evidence exists that supports incorporating a patient-centered approach to asthma management, in order to achieve improved outcomes and patient health. PMID:22915970

Shared decision making in chronic care in the context of evidence based practice in nursing.

PubMed

Friesen-Storms, Jolanda H H M; Bours, Gerrie J J W; van der Weijden, Trudy; Beurskens, Anna J H M

2015-01-01

In the decision-making environment of evidence-based practice, the following three sources of information must be integrated: research evidence of the intervention, clinical expertise, and the patient's values. In reality, evidence-based practice usually focuses on research evidence (which may be translated into clinical practice guidelines) and clinical expertise without considering the individual patient's values. The shared decision-making model seems to be helpful in the integration of the individual patient's values in evidence-based practice. We aim to discuss the relevance of shared decision making in chronic care and to suggest how it can be integrated with evidence-based practice in nursing. We start by describing the following three possible approaches to guide the decision-making process: the paternalistic approach, the informed approach, and the shared decision-making approach. Implementation of shared decision making has gained considerable interest in cases lacking a strong best-treatment recommendation, and when the available treatment options are equivalent to some extent. We discuss that in chronic care it is important to always invite the patient to participate in the decision-making process. We delineate the following six attributes of health care interventions in chronic care that influence the degree of shared decision making: the level of research evidence, the number of available intervention options, the burden of side effects, the impact on lifestyle, the patient group values, and the impact on resources. Furthermore, the patient's willingness to participate in shared decision making, the clinical expertise of the nurse, and the context in which the decision making takes place affect the shared decision-making process. A knowledgeable and skilled nurse with a positive attitude towards shared decision making—integrated with evidence-based practice—can facilitate the shared decision-making process. We conclude that nurses as well as other health care professionals in chronic care should integrate shared decision making with evidence-based practice to deliver patient-centred care. Copyright © 2014 Elsevier Ltd. All rights reserved.

Establishing Priorities for Oncology Nursing Research: Nurse and Patient Collaboration.

PubMed

Cox, Anna; Arber, Anne; Gallagher, Ann; MacKenzie, Mairead; Ream, Emma

2017-03-01

To obtain consensus on priorities for oncology nursing research in the United Kingdom.
. A three-round online Delphi survey.
. Oncology nurses were invited via the United Kingdom Oncology Nursing Society (UKONS) database. Patient participation was invited through patient organizations.
. 50 oncology nurses and 18 patients.
. Eligible and consenting individuals reported five priorities for oncology nursing research (round 1), rated their level of agreement with them (round 2), and restated and revised their responses in light of the group's responses (round 3). Consensus was defined as 80% agreement.
. Research priorities for oncology nursing as reported by oncology nurses and patients. 
. Consensus was reached on 50 of 107 research priorities. These priorities reflected the entire cancer pathway, from diagnosis to palliative care. Highest agreement was reached within and across groups on the need for research relating to prevention, screening, early diagnosis, and psychological care across the cancer trajectory. Little consensus was reached regarding symptoms and side effects. Some evident divergence existed. Oncology nurses and patients do not necessarily prioritize the same research areas. Prevention, screening, and early diagnosis are of the highest priority for future research among oncology nurses and patients. 
. Patients usually play little part in priority setting for research. This study provided the opportunity for meaningful patient and nurse involvement in setting a research agenda for oncology nursing that is relevant and beneficial to oncology nurses and patients.

Depression in Cardiovascular Patients in Middle Eastern Populations: A Literature Review.

PubMed

Donnelly, Tam Truong; Al Suwaidi, Jassim Mohd; Al-Qahtani, Awad; Asaad, Nidal; Qader, Najlaa Abdul; Singh, Rajvir; Fung, Tak Shing; Mueed, Irem; Sharara, Shima; El Banna, Noha; Omar, Sarah

2015-08-01

Cardiovascular disease (CVD) is increasing in Middle Eastern countries. Depression is associated with increased morbidity and mortality rates among cardiovascular (CV) patients. Early detection of and intervention for depression among CV patients can reduce morbidity and mortality and save health care costs. Public information on mental health care needs of Arab CV patients living in Middle East regions is scattered and limited. This literature review surveyed and summarized research studies to learn what is known about the relationship between depression and CVD in Middle Eastern populations. The information will raise awareness among health care professionals and policy makers regarding the clinical significance of depression in Arab CV patients. It might contribute to development of culturally appropriate and effective mental health care services. Multiple databases were searched and 60 articles were assessed, including studies that investigated depression in Arab CV patient populations, physiological mechanisms of depression-CVD comorbidity, and intervention strategies that affect CV risk in depressed Arab patients. We discuss the extent to which this issue has been explored in Arab populations living in Middle East regions and Arab populations living abroad. We recommend that more comprehensive and in-depth research studies be conducted with Arab cardiac patients to enable implementation of culturally appropriate and effective mental health care interventions.

Palliative Medicine and Decision Science: The Critical Need for a Shared Agenda To Foster Informed Patient Choice in Serious Illness

PubMed Central

Kryworuchko, Jennifer; Matlock, Dan D.; Volandes, Angelo E.

2011-01-01

Abstract Assisting patients and their families in complex decision making is a foundational skill in palliative care; however, palliative care clinicians and scientists have just begun to establish an evidence base for best practice in assisting patients and families in complex decision making. Decision scientists aim to understand and clarify the concepts and techniques of shared decision making (SDM), decision support, and informed patient choice in order to ensure that patient and family perspectives shape their health care experience. Patients with serious illness and their families are faced with myriad complex decisions over the course of illness and as death approaches. If patients lose capacity, then surrogate decision makers are cast into the decision-making role. The fields of palliative care and decision science have grown in parallel. There is much to be gained in advancing the practices of complex decision making in serious illness through increased collaboration. The purpose of this article is to use a case study to highlight the broad range of difficult decisions, issues, and opportunities imposed by a life-limiting illness in order to illustrate how collaboration and a joint research agenda between palliative care and decision science researchers, theorists, and clinicians might guide best practices for patients and their families. PMID:21895453

Integrating spirituality into patient care: an essential element of person‑centered care.

PubMed

Puchalski, Christina M

2013-01-01

Spirituality and health is a growing field of healthcare. It grew out of courses in spirituality and health developed for medical students in the United States. Research in this area over the last 30 years has also formed an evidence base for spirituality and health. Studies have demonstrated an association between spiritual beliefs and values and a variety of healthcare outcomes. More recent research has also shown a strong desire on the part of patients to have their spirituality addressed as part of their care. Studies also show that spiritual care has an impact on patient decision making, particularly in end-of-life care. The Association of American Medical Colleges developed a broad definition of spirituality as well as learning objectives and guidelines for teaching. Standards in organizations such as the American College of Physicians support physicians treating the whole person, that is, the body, mind, and spirit. In 2009, National Competencies in Spirituality and Health education were developed in the United States with schools currently working on curriculum projects based on these competencies. Models are being developed for all members of the healthcare team to address patient distress, in cooperation with chaplains as spiritual care experts. The goals are to develop a biopsychosocial and spiritual assessment and treatment as part of compassionate whole-person care of all patients.

Blame the Patient, Blame the Doctor or Blame the System? A Meta-Synthesis of Qualitative Studies of Patient Safety in Primary Care

PubMed Central

Daker-White, Gavin; Hays, Rebecca; McSharry, Jennifer; Giles, Sally; Cheraghi-Sohi, Sudeh; Rhodes, Penny; Sanders, Caroline

2015-01-01

Objective Studies of patient safety in health care have traditionally focused on hospital medicine. However, recent years have seen more research located in primary care settings which have different features compared to secondary care. This study set out to synthesize published qualitative research concerning patient safety in primary care in order to build a conceptual model. Method Meta-ethnography, an interpretive synthesis method whereby third order interpretations are produced that best describe the groups of findings contained in the reports of primary studies. Results Forty-eight studies were included as 5 discrete subsets where the findings were translated into one another: patients’ perspectives of safety, staff perspectives of safety, medication safety, systems or organisational issues and the primary/secondary care interface. The studies were focused predominantly on issues seen to either improve or compromise patient safety. These issues related to the characteristics or behaviour of patients, staff or clinical systems and interactions between staff, patients and staff, or people and systems. Electronic health records, protocols and guidelines could be seen to both degrade and improve patient safety in different circumstances. A conceptual reading of the studies pointed to patient safety as a subjective feeling or judgement grounded in moral views and with potentially hidden psychological consequences affecting care processes and relationships. The main threats to safety appeared to derive from ‘grand’ systems issues, for example involving service accessibility, resources or working hours which may not be amenable to effective intervention by individual practices or health workers, especially in the context of a public health system. Conclusion Overall, the findings underline the human elements in patient safety primary health care. The key to patient safety lies in effective face-to-face communication between patients and health care staff or between the different staff involved in the care of an individual patient. Electronic systems can compromise safety when they override the opportunities for face-to-face communication. The circumstances under which guidelines or protocols are seen to either compromise or improve patient safety needs further investigation. PMID:26244494

A comparison of critical care research funding and the financial burden of critical illness in the United States.

PubMed

Coopersmith, Craig M; Wunsch, Hannah; Fink, Mitchell P; Linde-Zwirble, Walter T; Olsen, Keith M; Sommers, Marilyn S; Anand, Kanwaljeet J S; Tchorz, Kathryn M; Angus, Derek C; Deutschman, Clifford S

2012-04-01

To estimate federal dollars spent on critical care research, the cost of providing critical care, and to determine whether the percentage of federal research dollars spent on critical care research is commensurate with the financial burden of critical care. The National Institutes of Health Computer Retrieval of Information on Scientific Projects database was queried to identify funded grants whose title or abstract contained a key word potentially related to critical care. Each grant identified was analyzed by two reviewers (three if the analysis was discordant) to subjectively determine whether it was definitely, possibly, or definitely not related to critical care. Hospital and total costs of critical care were estimated from the Premier Database, state discharge data, and Medicare data. To estimate healthcare expenditures associated with caring for critically ill patients, total costs were calculated as the combination of hospitalization costs that included critical illness as well as additional costs in the year after hospital discharge. Of 19,257 grants funded by the National Institutes of Health, 332 (1.7%) were definitely related to critical care and a maximum of 1212 (6.3%) grants were possibly related to critical care. Between 17.4% and 39.0% of total hospital costs were spent on critical care, and a total of between $121 and $263 billion was estimated to be spent on patients who required intensive care. This represents 5.2% to 11.2%, respectively, of total U.S. healthcare spending. The proportion of research dollars spent on critical care is lower than the percentage of healthcare expenditures related to critical illness.

Implementation of integration strategies between primary care units and a regional general hospital in Brazil to update and connect health care professionals: a quasi-experimental study protocol.

PubMed

Bracco, Mario Maia; Mafra, Ana Carolina Cintra Nunes; Abdo, Alexandre Hannud; Colugnati, Fernando Antonio Basile; Dalla, Marcello Dala Bernardina; Demarzo, Marcelo Marcos Piva; Abrahamsohn, Ises; Rodrigues, Aline Pacífico; Delgado, Ana Violeta Ferreira de Almeida; Dos Prazeres, Glauber Alves; Teixeira, José Carlos; Possa, Silvio

2016-08-12

Better communication among field health care teams and points of care, together with investments focused on improving teamwork, individual management, and clinical skills, are strategies for achieving better outcomes in patient-oriented care. This research aims to implement and evaluate interventions focused on improving communication and knowledge among health teams based on points of care in a regional public health outreach network, assessing the following hypotheses: 1) A better-working communication process between hospitals and primary health care providers can improve the sharing of information on patients as well as patients' outcomes. 2) A skill-upgrading education tool offered to health providers at their work sites can improve patients' care and outcomes. A quasi-experimental study protocol with a mixed-methods approach (quantitative and qualitative) was developed to evaluate communication tools for health care professionals based in primary care units and in a general hospital in the southern region of São Paulo City, Brazil. The usefulness and implementation processes of the integration strategies will be evaluated, considering: 1) An Internet-based communication platform that facilitates continuity and integrality of care to patients, and 2) A tailored updating distance-learning course on ambulatory care sensitive conditions for clinical skills improvements. The observational study will evaluate a non-randomized cohort of adult patients, with historical controls. Hospitalized patients diagnosed with an ambulatory care sensitive condition will be selected and followed for 1 year after hospital discharge. Data will be collected using validated questionnaires and from patients' medical records. Health care professionals will be evaluated related to their use of education and communication tools and their demographic and psychological profiles. The primary outcome measured will be the patients' 30-day hospital readmission rates. A sample size of 560 patients was calculated to fit a valid logistic model. In addition, qualitative approaches will be used to identify subjective perceptions of providers about the implementation process and of patients about health system use. This research project will gather relevant information about implementation processes for education and communication tools and their impact on human resources training, rates of readmission, and patient-related outcomes.

Team science as interprofessional collaborative research practice: a systematic review of the science of team science literature.

PubMed

Little, Meg M; St Hill, Catherine A; Ware, Kenric B; Swanoski, Michael T; Chapman, Scott A; Lutfiyya, M Nawal; Cerra, Frank B

2017-01-01

The National Institute of Health's concept of team science is a means of addressing complex clinical problems by applying conceptual and methodological approaches from multiple disciplines and health professions. The ultimate goal is the improved quality of care of patients with an emphasis on better population health outcomes. Collaborative research practice occurs when researchers from >1 health-related profession engage in scientific inquiry to jointly create and disseminate new knowledge to clinical and research health professionals in order to provide the highest quality of patient care to improve population health outcomes. Training of clinicians and researchers is necessary to produce clinically relevant evidence upon which to base patient care for disease management and empirically guided team-based patient care. In this study, we hypothesized that team science is an example of effective and impactful interprofessional collaborative research practice. To assess this hypothesis, we examined the contemporary literature on the science of team science (SciTS) produced in the past 10 years (2005-2015) and related the SciTS to the overall field of interprofessional collaborative practice, of which collaborative research practice is a subset. A modified preferred reporting items for systematic reviews and meta-analyses (PRISMA) approach was employed to analyze the SciTS literature in light of the general question: Is team science an example of interprofessional collaborative research practice? After completing a systematic review of the SciTS literature, the posed hypothesis was accepted, concluding that team science is a dimension of interprofessional collaborative practice. Copyright © 2016 American Federation for Medical Research.

Priorities for Evaluating Palliative Care Outcomes in Intensive Care Units.

PubMed

Bakitas, Marie; Dionne-Odom, J Nicholas; Kamal, Arif; Maguire, Jennifer M

2015-09-01

Defining the quality of intensive care unit (ICU) care when patients are dying is challenging. Palliative care has been recommended to improve outcomes of dying ICU patients; however, traditional ICU quality indicators do not always align with palliative care. Evidence suggests that some aspects of ICU care improve when palliative care is integrated; however, consensus is lacking concerning the outcomes that should be measured. Overcoming challenges to measuring palliative care will require consensus development and rigorous research on the best way to evaluate ICU palliative care services. Copyright © 2015 Elsevier Inc. All rights reserved.

Understanding the bereavement care roles of nurses within acute care: a systematic review.

PubMed

Raymond, Anita; Lee, Susan F; Bloomer, Melissa J

2017-07-01

To investigate nurses' roles and responsibilities in providing bereavement care during the care of dying patients within acute care hospitals. Bereavement within acute care hospitals is often sudden, unexpected and managed by nurses who may have limited access to experts. Nurses' roles and experience in the provision of bereavement care can have a significant influence on the subsequent bereavement process for families. Identifying the roles and responsibilities, nurses have in bereavement care will enhance bereavement supports within acute care environments. Mixed-methods systematic review. The review was conducted using the databases Cumulative Index Nursing and Allied Health Literature Plus, Embase, Ovid MEDLINE, PsychINFO, CareSearch and Google Scholar. Included studies published between 2006-2015, identified nurse participants, and the studies were conducted in acute care hospitals. Seven studies met the inclusion criteria, and the research results were extracted and subjected to thematic synthesis. Nurses' role in bereavement care included patient-centred care, family-centred care, advocacy and professional development. Concerns about bereavement roles included competing clinical workload demands, limitations of physical environments in acute care hospitals and the need for further education in bereavement care. Further research is needed to enable more detailed clarification of the roles nurse undertake in bereavement care in acute care hospitals. There is also a need to evaluate the effectiveness of these nursing roles and how these provisions impact on the bereavement process of patients and families. The care provided by acute care nurses to patients and families during end-of-life care is crucial to bereavement. The bereavement roles nurses undertake are not well understood with limited evidence of how these roles are measured. Further education in bereavement care is needed for acute care nurses. © 2016 John Wiley & Sons Ltd.

Nursing application of Bobath principles in stroke care.

PubMed

Passarella, P M; Lewis, N

1987-04-01

The nursing approach in the care of stroke patients has a direct impact on functional outcome. Nursing application of Bobath principles in stroke care offers a nursing focus on involvement of the affected side; facilitation of normal tone, posture, and movement; and development of more normal function. A research study evaluating the functional gains of stroke patients demonstrated a significant level of functional improvement in those treated with Bobath principles over stroke patients treated with the traditional nursing approach. Practical methods for applying Bobath principles in patient care activities are described. These therapeutic methods provide nurses with the means to maximize stroke patients' potential and further influence their functional recovery.

78 FR 63206 - Vacancy on Board of Governors of the Patient-Centered Outcomes Research Institute (PCORI)

Federal Register 2010, 2011, 2012, 2013, 2014

2013-10-23

... GOVERNMENT ACCOUNTABILITY OFFICE Vacancy on Board of Governors of the Patient-Centered Outcomes... Outcomes Research Institute and for filling vacancies that may occur. Board members must meet the... Care, Attention: Patient Centered Outcomes Research Institute, 441 G Street NW., Washington, DC 20548...

Randomized controlled trial of care bundles with chlorhexidine dressing and advanced dressings to prevent catheter-related bloodstream infections in pediatric hematology-oncology patients.

PubMed

Gerçeker, Gülçin Özalp; Yardımcı, Figen; Aydınok, Yeşim

2017-06-01

To compare the effects of the care bundles including chlorhexidine dressing and advanced dressings on the catheter-related bloodstream infection (CRBSI) rates in pediatric hematology-oncology patients with central venous catheters (CVCs). Twenty-seven PHO patients were recruited to participate in a prospective, randomized study in Turkey. The researcher used care bundles with chlorhexidine dressing in the experimental group (n = 14), and care bundles with advanced dressings in the control group (n = 13). According to the study results, 28.6% of the patients in the experimental group had CRBSI, while this rate was 38.5% in the control group patients. The CRBSI rate in the experimental group was 3.9, and the control group had 4.4 per 1000 inpatient catheter days. There was no exit-site infection in the experimental group. However, the control group had 1.7 per 1000 inpatient catheter days. Even though there was no difference between the two groups in which the researcher implemented care bundles with chlorhexidine dressing and advanced dressings in terms of CRBSI development, there was reduction in the CRBSI rates thanks to the care bundle approach. It is possible to control the CRBSI rates using care bundles in pediatric hematology-oncology patients. Copyright © 2017 Elsevier Ltd. All rights reserved.

Ethics research in critically ill patients.

PubMed

Estella, A

2018-05-01

Research in critical care patients is an ethical obligation. The ethical conflicts of intensive care research arise from patient vulnerability, since during ICU admission these individuals sometimes lose all or part of their decision making capacity and autonomy. We therefore must dedicate effort to ensure that neither treatment (sedation or mechanical ventilation) nor the disease itself can affect the right to individual freedom of the participants in research, improving the conditions under which informed consent must be obtained. Fragility, understood as a decrease in the capacity to tolerate adverse effects derived from research must be taken into account in selecting the participants. Research should be relevant, not possible to carry out in non-critical patients, and a priori should offer potential benefits that outweigh the risks that must be known and assumable, based on principles of responsibility. Copyright © 2018 Elsevier España, S.L.U. y SEMICYUC. All rights reserved.

Bench, Bedside, Curbside, and Home: Translational Research to Include Transformative Change Using Educational Research

ERIC Educational Resources Information Center

Felege, Christopher; Hahn, Emily; Hunter, Cheryl

2016-01-01

Translational research originated in the medical field during the 1990s to describe taking discovery based research through the steps of applying it to clinical research and patient-oriented care. This model is implicitly linear, depicting the flow of information from researchers' bench, to a clinical trial bedside, to a primary care physician's…

Rural Emergency Nurses' Suggestions for Improving End-of-Life Care.

PubMed

Beckstrand, Renea L; Smith, Kelly E; Luthy, Karlen E Beth; Macintosh, Janelle L B

2017-05-01

Many patient visits to emergency departments result in the patient dying or being pronounced dead on arrival. The numbers of deaths in emergency departments are likely to increase as a significant portion of the U.S. population ages. Consequently, emergency nurses face many obstacles to providing quality end-of-life (EOL) care when death occurs. The purpose of this study was to identify suggestions that emergency nurses have to improve EOL care, specifically in rural emergency departments. A 57-item questionnaire was sent to 53 rural hospitals in 4 states in the Intermountain West, plus Alaska. One item asked nurses to identify the one aspect of EOL care they would change for dying patients in rural emergency departments. Each qualitative response was individually reviewed by a research team and then coded into a theme. Four major themes and three minor themes were identified. The major themes were providing greater privacy during EOL care for patients and family members, increasing availability of support services, additional staffing, and improved staff and community education. Providing adequate privacy for patients and family members was a major obstacle to providing EOL care in the emergency department, largely because of poor department design, especially in rural emergency departments where space is limited. Lack of support services and adequate staffing were also obstacles to providing quality EOL care in rural emergency departments. Consequently, rural nurses are commonly pulled away from EOL care to perform ancillary duties because additional support personnel are lacking. Providing EOL care in rural emergency departments is a challenging task given the limited staffing and resources, and thus it is imperative that nurses' suggestions for improvement of EOL care be acknowledged. Because of the current lack of research in rural EOL care, additional research is needed. Copyright © 2015 Emergency Nurses Association. Published by Elsevier Inc. All rights reserved.

Road map to a patient-centered research agenda at the intersection of hospital medicine and geriatric medicine.

PubMed

Wald, Heidi L; Leykum, Luci K; Mattison, Melissa L P; Vasilevskis, Eduard E; Meltzer, David O

2014-06-01

As the United States ages, the patient population in acute care hospitals is increasingly older and more medically complex. Despite evidence of a high burden of disease, high costs, and often poor outcomes of care, there is limited understanding of the presentation, diagnostic strategies, and management of acute illness in older adults. In this paper, we present a strategy for the development of a research agenda at the intersection of hospital and geriatric medicine. This approach is informed by the Patient-Centered Outcomes Research Institute (PCORI) framework for identification and prioritization of research areas, emphasizing input from patients and caregivers. The framework's four components are: 1) Topic generation, 2) Gap Analysis in Systematic Review, 3) Value of information (VOI) analysis, and 4) Peer Review. An inclusive process for topic generation requiring the systematic engagement of multiple stakeholders, especially patients, is emphasized. In subsequent steps, researchers and stakeholders prioritize research topics in order to identify areas that optimize patient-centeredness, population impact, impact on clinical decision making, ease of implementation, and durability. Finally, next steps for dissemination of the research agenda and evaluation of the impact of the patient-centered research prioritization process are described.

“Just another fish in the pond”: the transitional care experience of a hip fracture patient

PubMed Central

Toscan, Justine; Manderson, Brooke; Santi, Selena M; Stolee, Paul

2013-01-01

Introduction Miscommunication and lack of coordination can compromise care quality and patient safety during transitions in care, especially for medically complex older adults. Little research has been done to investigate care transitions from the perspective of those receiving and providing care. Methods This study explored multiple care transitions for an elderly hip fracture patient, post-surgery. Interviews and observations were conducted with the patient, their family caregivers, and health care providers, at each point of transition between four different care settings. Results Four key themes were identified over the patients care trajectory: ‘Missing Crucial Coversations’—Patient and family caregivers did not feel involved or informed about decisions in care; ‘Who’s Who’—Confusion about the role of health care providers; ‘Ready or Not’—Not knowing what to expect or what is expected; and, ‘Playing by the Rules’—Health system policies and procedures hinder individualized care. Conclusion Study findings point to the need for the health care system to engage patients and family caregivers more fully and consistently in the process of care transitions as well as the importance of understanding these processes from multiple perspectives. Recommendations for system integration are proposed with a focus on transitional care. PMID:23882170

The Impact of Three-month Training Programme on Foot Care and Self-efficacy of Patients with Diabetic Foot Ulcers.

PubMed

Bahador, Raziyeh Sadat; Afrazandeh, Seyedeh Sara; Ghanbarzehi, Nezar; Ebrahimi, Maryam

2017-07-01

Patient's self-efficacy in disease management and foot care is considered as an important indicator in controlling the complications of diabetes. This study was aimed to determine the effect of three-month training programme on foot care and self-efficacy of patients with diabetic foot ulcers. A quasi-experimental study was conducted on 60 patients with diabetic foot ulcers in Jiroft Imam Khomeini hospital from January 2016 to May 2016. These patients were randomly divided into intervention and control groups (30 patients in each group). The research instrument was a questionnaire on demographic data, self-efficacy questions for patients with diabetes and a researcher made questionnaire of diabetic foot care. Training programmes for foot ulcers care and prevention of new ulcers formation and other aspects of the disease were implemented during three months in the test group. Data were analysed using descriptive and analytic statistical tests (Mann-Whitney U, paired t-test and Pearson correlation coefficient) by SPSS version 18.0 software. The results showed statistically significant difference (p<0.001) in the score of self-efficacy between intervention group (182.25) and control group (93.56), and the foot care score was 47.43 in the intervention group and 30.18 in control group after the intervention. The average scores of self-efficacy and foot ulcers care significantly increased in the intervention group after training programme (p<0.001). The results showed that the implementation of training programme has been able to increase the self-efficacy of patients and the rate of their foot ulcers care and the prevention of new ulcers and effectively reduce the complications in diabetic patients.

Impact of patient navigation on timely cancer care: the Patient Navigation Research Program.

PubMed

Freund, Karen M; Battaglia, Tracy A; Calhoun, Elizabeth; Darnell, Julie S; Dudley, Donald J; Fiscella, Kevin; Hare, Martha L; LaVerda, Nancy; Lee, Ji-Hyun; Levine, Paul; Murray, David M; Patierno, Steven R; Raich, Peter C; Roetzheim, Richard G; Simon, Melissa; Snyder, Frederick R; Warren-Mears, Victoria; Whitley, Elizabeth M; Winters, Paul; Young, Gregory S; Paskett, Electra D

2014-06-01

Patient navigation is a promising intervention to address cancer disparities but requires a multisite controlled trial to assess its effectiveness. The Patient Navigation Research Program compared patient navigation with usual care on time to diagnosis or treatment for participants with breast, cervical, colorectal, or prostate screening abnormalities and/or cancers between 2007 and 2010. Patient navigators developed individualized strategies to address barriers to care, with the focus on preventing delays in care. To assess timeliness of diagnostic resolution, we conducted a meta-analysis of center- and cancer-specific adjusted hazard ratios (aHRs) comparing patient navigation vs usual care. To assess initiation of cancer therapy, we calculated a single aHR, pooling data across all centers and cancer types. We conducted a metaregression to evaluate variability across centers. All statistical tests were two-sided. The 10521 participants with abnormal screening tests and 2105 with a cancer or precancer diagnosis were predominantly from racial/ethnic minority groups (73%) and publically insured (40%) or uninsured (31%). There was no benefit during the first 90 days of care, but a benefit of navigation was seen from 91 to 365 days for both diagnostic resolution (aHR = 1.51; 95% confidence interval [CI] = 1.23 to 1.84; P < .001)) and treatment initiation (aHR = 1.43; 95% CI = 1.10 to 1.86; P < .007). Metaregression revealed that navigation had its greatest benefits within centers with the greatest delays in follow-up under usual care. Patient navigation demonstrated a moderate benefit in improving timely cancer care. These results support adoption of patient navigation in settings that serve populations at risk of being lost to follow-up. © The Author 2014. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oup.com.

Impact of Patient Navigation on Timely Cancer Care: The Patient Navigation Research Program

PubMed Central

Battaglia, Tracy A.; Calhoun, Elizabeth; Darnell, Julie S.; Dudley, Donald J.; Fiscella, Kevin; Hare, Martha L.; LaVerda, Nancy; Lee, Ji-Hyun; Levine, Paul; Murray, David M.; Patierno, Steven R.; Raich, Peter C.; Roetzheim, Richard G.; Simon, Melissa; Snyder, Frederick R.; Warren-Mears, Victoria; Whitley, Elizabeth M.; Winters, Paul; Young, Gregory S.; Paskett, Electra D.

2014-01-01

Background Patient navigation is a promising intervention to address cancer disparities but requires a multisite controlled trial to assess its effectiveness. Methods The Patient Navigation Research Program compared patient navigation with usual care on time to diagnosis or treatment for participants with breast, cervical, colorectal, or prostate screening abnormalities and/or cancers between 2007 and 2010. Patient navigators developed individualized strategies to address barriers to care, with the focus on preventing delays in care. To assess timeliness of diagnostic resolution, we conducted a meta-analysis of center- and cancer-specific adjusted hazard ratios (aHRs) comparing patient navigation vs usual care. To assess initiation of cancer therapy, we calculated a single aHR, pooling data across all centers and cancer types. We conducted a metaregression to evaluate variability across centers. All statistical tests were two-sided. Results The 10521 participants with abnormal screening tests and 2105 with a cancer or precancer diagnosis were predominantly from racial/ethnic minority groups (73%) and publically insured (40%) or uninsured (31%). There was no benefit during the first 90 days of care, but a benefit of navigation was seen from 91 to 365 days for both diagnostic resolution (aHR = 1.51; 95% confidence interval [CI] = 1.23 to 1.84; P < .001)) and treatment initiation (aHR = 1.43; 95% CI = 1.10 to 1.86; P < .007). Metaregression revealed that navigation had its greatest benefits within centers with the greatest delays in follow-up under usual care. Conclusions Patient navigation demonstrated a moderate benefit in improving timely cancer care. These results support adoption of patient navigation in settings that serve populations at risk of being lost to follow-up. PMID:24938303

Assessment of Cancer-Related Fatigue, Pain, and Quality of Life in Cancer Patients at Palliative Care Team Referral: A Multicenter Observational Study (JORTC PAL-09).

PubMed

Iwase, Satoru; Kawaguchi, Takashi; Tokoro, Akihiro; Yamada, Kimito; Kanai, Yoshiaki; Matsuda, Yoshinobu; Kashiwaya, Yuko; Okuma, Kae; Inada, Shuji; Ariyoshi, Keisuke; Miyaji, Tempei; Azuma, Kanako; Ishiki, Hiroto; Unezaki, Sakae; Yamaguchi, Takuhiro

2015-01-01

Cancer-related fatigue greatly influences quality of life in cancer patients; however, no specific treatments have been established for cancer-related fatigue, and at present, no medication has been approved in Japan. Systematic research using patient-reported outcome to examine symptoms, particularly fatigue, has not been conducted in palliative care settings in Japan. The objective was to evaluate fatigue, pain, and quality of life in cancer patients at the point of intervention by palliative care teams. Patients who were referred to palliative care teams at three institutions and met the inclusion criteria were invited to complete the Brief Fatigue Inventory, Brief Pain Inventory, and European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative. Of 183 patients recruited, the majority (85.8%) were diagnosed with recurrence or metastasis. The largest group (42.6%) comprised lung cancer patients, of whom 67.2% had an Eastern Cooperative Oncology Group Performance Status of 0-1. The mean value for global health status/quality of life was 41.4, and the highest mean European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative symptom item score was for pain (51.0). The mean global fatigue score was 4.1, and 9.8%, 30.6%, 38.7%, and 20.8% of patients' fatigue severity was classified as none (score 0), mild (1-3), moderate (4-6), and severe (7-10), respectively. Cancer-related fatigue, considered to occur more frequently in cancer patients, was successfully assessed using patient-reported outcomes with the Brief Fatigue Inventory for the first time in Japan. Results suggested that fatigue is potentially as problematic as pain, which is the main reason for palliative care.

Social media and rating sites as tools to understanding quality of care: a scoping review.

PubMed

Verhoef, Lise M; Van de Belt, Tom H; Engelen, Lucien J L P G; Schoonhoven, Lisette; Kool, Rudolf B

2014-02-20

Insight into the quality of health care is important for any stakeholder including patients, professionals, and governments. In light of a patient-centered approach, it is essential to assess the quality of health care from a patient's perspective, which is commonly done with surveys or focus groups. Unfortunately, these "traditional" methods have significant limitations that include social desirability bias, a time lag between experience and measurement, and difficulty reaching large groups of people. Information on social media could be of value to overcoming these limitations, since these new media are easy to use and are used by the majority of the population. Furthermore, an increasing number of people share health care experiences online or rate the quality of their health care provider on physician rating sites. The question is whether this information is relevant to determining or predicting the quality of health care. The goal of our research was to systematically analyze the relation between information shared on social media and quality of care. We performed a scoping review with the following goals: (1) to map the literature on the association between social media and quality of care, (2) to identify different mechanisms of this relationship, and (3) to determine a more detailed agenda for this relatively new research area. A recognized scoping review methodology was used. We developed a search strategy based on four themes: social media, patient experience, quality, and health care. Four online scientific databases were searched, articles were screened, and data extracted. Results related to the research question were described and categorized according to type of social media. Furthermore, national and international stakeholders were consulted throughout the study, to discuss and interpret results. Twenty-nine articles were included, of which 21 were concerned with health care rating sites. Several studies indicate a relationship between information on social media and quality of health care. However, some drawbacks exist, especially regarding the use of rating sites. For example, since rating is anonymous, rating values are not risk adjusted and therefore vulnerable to fraud. Also, ratings are often based on only a few reviews and are predominantly positive. Furthermore, people providing feedback on health care via social media are presumably not always representative for the patient population. Social media and particularly rating sites are an interesting new source of information about quality of care from the patient's perspective. This new source should be used to complement traditional methods, since measuring quality of care via social media has other, but not less serious, limitations. Future research should explore whether social media are suitable in practice for patients, health insurers, and governments to help them judge the quality performance of professionals and organizations.

Evaluation of an action research project in ophthalmic nursing practice.

PubMed

Waterman, Heather; Harker, Rona; MacDonald, Heather; McLaughlan, Rita; Waterman, Christine

2005-11-01

This paper reports the evaluation phase of an action research project that promoted face-down posturing of patients following vitreo-retinal surgery for macular hole to enhance patient outcomes. The evaluation phase identified areas of practice needing further development from the perspectives of those involved with the care of patients. To achieve best results following surgical repair of macular hole, patients are required to posture face down for several weeks. As a consequence, patients complain of severe back and neck ache and find it difficult to persist with the posturing. Work to advance nursing practice as surgical developments occur has relevance beyond ophthalmology and the particular context of this project. The first three phases of this action research--problem identification, planning and action--have been reported in another paper. Throughout the project an action research group comprising of representatives of key stakeholders were actively involved in researching and changing practice. During the evaluation phase, a qualitative methodology was chosen. Interviews with 17 members of staff from the inpatient area were carried out to elicit their perspectives on the posturing of patients. Qualitative interviews were selected to facilitate comparison with interview data from Phase 1. Data analysis ran concurrently with data collection, so that one could inform the other. Overall, nurses and healthcare support workers felt that patients were more agreeable to posturing and after surgery began to posture more quickly. Communication was still an issue in some instances, and patients having urgent as opposed to planned surgery were found to be more difficult to prepare and the psychological care of patients still posed problems for nursing staff. The evaluation suggests that improvements in the care of this group of patients have occurred. A 10-point plan to promote face-down posturing has been developed which will be of use to practitioners in other settings. Some aspects of practice remain less well-understood, for example, the psychological care of patients.

In what ways can low-cost portable monitors best be utilized for health research and patient care in locations that do not have an existing stationary monitoring network?

EPA Science Inventory

The presentation provides a short view point in response to the question "In what ways can low-cost portable monitors best be utilized for health research and patient care in locations that do not have an existing stationary monitoring network?" The response notes the ...

Co-creative development of an eHealth nursing intervention: Self-management support for outpatients with cancer pain.

PubMed

Hochstenbach, Laura M J; Courtens, Annemie M; Zwakhalen, Sandra M G; Vermeulen, Joan; van Kleef, Maarten; de Witte, Luc P

2017-08-01

Co-creative methods, having an iterative character and including different perspectives, allow for the development of complex nursing interventions. Information about the development process is essential in providing justification for the ultimate intervention and crucial in interpreting the outcomes of subsequent evaluations. This paper describes a co-creative method directed towards the development of an eHealth intervention delivered by registered nurses to support self-management in outpatients with cancer pain. Intervention development was divided into three consecutive phases (exploration of context, specification of content, organisation of care). In each phase, researchers and technicians addressed five iterative steps: research, ideas, prototyping, evaluation, and documentation. Health professionals and patients were consulted during research and evaluation steps. Collaboration of researchers, health professionals, patients and technicians was positive and valuable in optimising outcomes. The intervention includes a mobile application for patients and a web application for nurses. Patients are requested to monitor pain, adverse effects and medication intake, while being provided with graphical feedback, education and contact possibilities. Nurses monitor data, advise patients, and collaborate with the treating physician. Integration of patient self-management and professional care by means of eHealth key into well-known barriers and seem promising in improving cancer pain follow-up. Nurses are able to make substantial contributions because of their expertise, focus on daily living, and their bridging function between patients and health professionals in different care settings. Insights from the intervention development as well as the intervention content give thought for applications in different patients and care settings. Copyright © 2017 Elsevier Inc. All rights reserved.

Mindfulness-based interventions with social workers and the potential for enhanced patient-centered care: A systematic review of the literature.

PubMed

Trowbridge, Kelly; Mische Lawson, Lisa

2016-01-01

The use of mindfulness-based interventions (MBIs) is well documented in the mental health, medical, and education literature. There is minimal research on the use of mindfulness with social workers. As demonstrated in other professional and helping fields, mindfulness may enhance clinical skills, reduce burnout, and increase job satisfaction among social workers. In the health care field mindfulness appears integral to patient and family relationships and personal resilience. The evolving and expanding role of hospital social workers may lead to increased work stress and greater demands from both the medical system and patients and families. Research with medical providers, such as physicians and nurses, suggests mindfulness may help in reducing stress, enhancing relationships, and fostering the self-reflection required to provide patient-centered care. We systematically reviewed the existing literature to begin understanding both mindfulness qualities and practices and the effectiveness of MBIs among social workers as well as the relationship of mindfulness to patient-centered care.

[The integration of telemedicine concepts in the regional care of rural areas: Possibilities, limitations, perspectives].

PubMed

van den Berg, Neeltje; Schmidt, S; Stentzel, U; Mühlan, H; Hoffmann, W

2015-04-01

In rural areas with a low population density and (imminent) gaps in regional health care, telemedicine concepts can be a promising option in supporting the supply of medical care.Telemedicine connections can be established between different health care providers (e.g., hospitals) or directly between health care providers and patients.Different scenarios for the implementation of telemedicine have been developed, from the monitoring of chronically ill patients to the support of acute care. Examples of frequently applied telemedicine concepts are teleradiology, telemedicine stroke networks, and the telemedicine monitoring of patients with heart failure. The development of concepts for other indications and patient groups is apparently difficult in Germany; one reason could be that research institutions are involved in only a small number of projects. However, the participation of research institutes would be of importance in creating more scientific evidence. The development of appropriate evaluation designs for analyzing the effectiveness of telemedicine concepts and economic effects is an important task and challenge for the future. Mandatory evaluation criteria should be developed to provide a basis for the translation of positively evaluated telemedicine concepts into routine care.

Patients' preferences for primary health care - a systematic literature review of discrete choice experiments.

PubMed

Kleij, Kim-Sarah; Tangermann, Ulla; Amelung, Volker E; Krauth, Christian

2017-07-11

Primary care is a key element of health care systems and addresses the main health problems of the population. Due to the demographic change, primary care even gains in importance. The knowledge of the patients' preferences can help policy makers as well as physicians to set priorities in their effort to make health care delivery more responsive to patients' needs. Our objective was to describe which aspects of primary care were included in preference studies and which of them were the most preferred aspects. In order to elicit the preferences for primary care, a systematic literature search was conducted. Two researchers searched three electronic databases (PubMed, Scopus, and PsycINFO) and conducted a narrative synthesis. Inclusion criteria were: focus on primary health care delivery, discrete choice experiment as elicitation method, and studies published between 2006 and 2015 in English language. We identified 18 studies that elicited either the patients' or the population's preferences for primary care based on a discrete choice experiment. Altogether the studies used 16 structure attributes, ten process attributes and four outcome attributes. The most commonly applied structure attribute was "Waiting time till appointment", the most frequently used process attribute was "Shared decision making / professional's attention paid to your views". "Receiving the 'best' treatment" was the most commonly applied outcome attribute. Process attributes were most often the ones of highest importance for patients or the population. The attributes and attribute levels used in the discrete choice experiments were identified by literature research, qualitative research, expert interviews, or the analysis of policy documents. The results of the DCE studies show different preferences for primary health care. The diversity of the results may have several reasons, such as the method of analysis, the selection procedure of the attributes and their levels or the specific research question of the study. As the results of discrete choice experiments depend on many different factors, it is important for a better comprehensibility of the studies to transparently report the steps undertaken in a study as well as the interim results regarding the identification of attributes and levels.

The economic burden of chronic disease care faced by households in Ukraine: a cross-sectional matching study of angina patients

PubMed Central

2013-01-01

Introduction Non-communicable diseases (NCDs) are the leading cause of death and disability worldwide, and their prevalence in lower- and middle-income countries (LMIC) is on the rise. The burden of chronic health expenditure born by patient households in these countries may be very high, particularly where out-of-pocket payments for health care are common. One such country where out-of-pocket payments are especially high is Ukraine. The financial impact of NCDs on households in this country has not been researched. Methods We set out to explore the burden of NCD care in Ukraine with a study of angina patients. Using data from the Ukraine World Health Survey of 2003 we employed the novel Coarsened Exact Matching approach to estimate the difference in out-of-pocket payment (OPP) for health care between households with a stable angina pectoris (a chronic form of IHD) patient and those without. The likelihood of engaging in catastrophic spending and using various distress financing mechanisms (e.g. sale of assets, borrowing) among angina households compared with non-angina households was also explored. Results Among angina patient households (n = 203), OPP occupied an average of 32% of household effective income. After matching, angina households experienced significantly higher monthly per capita OPP for health care (B = $2.84) and medicines (B = $2.94), but were not at significantly higher odds of engaging in catastrophic spending. Odds of engaging in ‘sale of assets’ (OR = 2.71) and ‘borrowing’ (OR = 1.68) to finance OPP were significantly higher among angina households. Conclusions The cost of chronic care in Ukraine places a burden on individual patient households. Households of angina patients are more likely to engage in distress financing to cover the cost of treatment, and a high proportion of patients do not acquire prescribed medicines because they cannot afford them. This warrants further research on the burden of NCD care in other LMIC, especially where OPP for health care is common. Health policies aimed at reducing OPP for health care, and especially medicines, would lessen the high health and financial burden of chronic care. Further research is also needed on the long-term impact of borrowing or sale of assets to finance OPP on patient households. PMID:23718769

Exploring end-of-life care for South Asian kidney patients: interviewer reflections.

PubMed

Wilkinson, Emma; Waqar, Muhammad; Gill, Balbir; Hoque, Pina; Jetha, Champa; Bola, Kulwinder Kaur; Mahmood, Riffat; Mahmood, Sultan; Saujani, Rita; Randhawa, Gurch

2017-03-16

The reduction of inequalities in access to quality care has been a central tenet of UK health policy. Ethnic minorities may experience additional inequalities because of language and other cultural barriers. This article reports interviewer reflections of conducting interviews with South Asian kidney patients about their experiences of end-of-life care. It explores themes which emerged from the analysis of a focus group held with eight bilingual research interviewers. The relevance of these themes to understanding inequalities and access to end-of-life care is discussed; together with the potential for the research process to contribute to service improvement.

Improving cancer patients' pain: the impact of the hospital specialist palliative care team.

PubMed

Jack, B; Hillier, V; Williams, A; Oldham, J

2006-12-01

Pain is reported to occur in the majority of patients with advanced cancer and is one of the main reasons for referral to a hospital specialist palliative care team. Yet despite this, there is a paucity of research into the impact the hospital specialist palliative care team has on pain control in patients. A non-equivalent control group design using a quota sample investigated 100 cancer patients who had been admitted to hospital for symptom control. Fifty patients received specialist hospital palliative care team intervention compared with 50 patients receiving traditional care. Outcome was assessed using the Palliative Care Assessment (PACA) tool on three occasions. There was no difference between the groups on the initial assessment and the results indicated that all cancer patients admitted to hospital had a significant improvement in their pain control. However, the patients who had the additional input of the palliative care team demonstrated a statistically significant greater improvement than the control group (P<0.001). Potential explanations are made for the results including the enhanced knowledge and skills of the hospital specialist palliative care team.

A Literature Review on Care at the End-of-Life in the Emergency Department

PubMed Central

Forero, Roberto; McDonnell, Geoff; Gallego, Blanca; McCarthy, Sally; Mohsin, Mohammed; Shanley, Chris; Formby, Frank; Hillman, Ken

2012-01-01

The hospitalisation and management of patients at the end-of-life by emergency medical services is presenting a challenge to our society as the majority of people approaching death explicitly state that they want to die at home and the transition from acute care to palliation is difficult. In addition, the escalating costs of providing care at the end-of-life in acute hospitals are unsustainable. Hospitals in general and emergency departments in particular cannot always provide the best care for patients approaching end-of-life. The main objectives of this paper are to review the existing literature in order to assess the evidence for managing patients dying in the emergency department, and to identify areas of improvement such as supporting different models of care and evaluating those models with health services research. The paper identified six main areas where there is lack of research and/or suboptimal policy implementation. These include uncertainty of treatment in the emergency department; quality of life issues, costs, ethical and social issues, interaction between ED and other health services, and strategies for out of hospital care. The paper concludes with some areas for policy development and future research. PMID:22500239

Simulated Patient Studies: An Ethical Analysis

PubMed Central

Rhodes, Karin V; Miller, Franklin G

2012-01-01

Context In connection with health care reform, the U.S. Department of Health and Human Services commissioned a “mystery shopper,” or simulated patient study, to measure access to primary care. But the study was shelved because of public controversy over “government spying” on doctors. Opponents of the study also raised ethical concerns about the use of deception with human subjects without soliciting their informed consent. Methods We undertook an ethical analysis of the use of simulated patient techniques in health services research, with a particular focus on research measuring access to care. Using a case study, we explored relevant methodological considerations and ethical principles relating to deceptive research without informed consent, as well as U.S. federal regulations permitting exceptions to consent. Findings Several relevant considerations both favor and oppose soliciting consent for simulated patient studies. Making research participation conditional on informed consent protects the autonomy of research subjects and shields them from unreasonable exposure to research risks. However, scientific validity is also an important ethical principle of human subjects research, as the net risks to subjects must be justified by the value to society of the knowledge to be gained. The use of simulated patients to monitor access is a naturalistic and scientifically sound experimental design that can answer important policy-relevant questions, with minimal risks to human subjects. As interaction between researchers and subjects increases, however, so does the need for consent. Conclusions As long as adequate protections of confidentiality of research data are in place, minimally intrusive simulated patient research that gathers policy-relevant data on the health system without the consent of individuals working in that system can be ethically justified when the risks and burdens to research subjects are minimal and the research has the potential to generate socially valuable knowledge. PMID:23216428

A Comparative Analysis of Patient Access Modes at Wilford Hall United States Air Force Medical Center and Selected Civilian Medical Centers

DTIC Science & Technology

1983-12-01

system is the provision of quality health care to patients . In recognition of this fundamental component of the social contract, executive management...deemed it necessary to request research be conducted to assure there were responsive and efficient patient access modes to health care services at...each of the other observed facilities. 2. The demand for health care by the patient population, seeking access to similar clinics or services at each of

The Sacred Heart Hospice: an Australian centre for palliative medicine.

PubMed

Stuart-Harris, R

1995-09-01

The Sacred Heart Hospice, Sydney, was founded in 1890 and is the largest inpatient palliative-care facility in Australia. Patients with advanced cancer form the predominant patient group, although patients with HIV/AIDS account for approximately 20% of admissions. A community-outreach service, established in 1983, cares for more patients at home than in the Hospice. Recently the Hospice has participated in a number of clinical trials and intends to become a regional centre for palliative-care research, education and training.

Patient satisfaction with health care services provided at HIV clinics at Amana and Muhimbili hospitals in Dar es Salaam.

PubMed

Kagashe, G A B; Rwebangila, F

2011-08-01

Since the establishment of free HIV/AIDS care and treatment services in Tanzania a lot of research has been done to assess how health care providers discharge their duties in these clinics. Little research however has been done regarding satisfaction of HIV patients with free health care services provided. To determine satisfaction of HIV patients with health care services provided at the HIV clinics and specifically, to determine patients' satisfaction with the general physical environment of the clinic and with services offered by doctors, nurses, laboratory, and pharmacy. A cross-sectional study was conducted at Muhimbili National Hospital (MNH) and Amana hospital. A total of 375 patients attending outpatient HIV clinics were selected randomly and interviewed using a questionnaire, after obtaining a verbal consent. Data collected was analyzed using Epi-info program version 6. Patients at Amana Hospital clinic were either very satisfied (44.3%) or satisfied (55.7%) and none were unsatisfied, while at MNH clinic 1.1% patients were very satisfied while (94.7%) were satisfied and (4.2%) were unsatisfied with health care services provided. Lack of privacy when consulting with doctors and the dispenser contributed to patients' unsatisfaction with the services. Most of the participants were satisfied with the services provided at the two clinics. However at MNH, a few patients were unsatisfied due to lack of privacy during consultation with doctors and with the pharmacy services.

An environmental scan of advance care planning decision AIDS for patients undergoing major surgery: a study protocol.

PubMed

Aslakson, Rebecca A; Schuster, Anne L R; Miller, Judith; Weiss, Matthew; Volandes, Angelo E; Bridges, John F P

2014-01-01

Patients who undergo major surgery are at risk for perioperative morbidity and mortality. It would be appropriate to initiate advance care planning with patients prior to surgery, but surgeons may experience difficulty initiating such conversations. Rather than focus on changing clinician behavior, advance care planning decision aids can be an innovative vehicle to motivate advance care planning among surgical patients and their families. The purpose of this paper is to describe a study protocol for conducting an environmental scan concerning advance care planning decision aids that may be relevant to patients undergoing high-risk surgery. This study will gather information from written or verbal data sources that incorporate professional and lay perspectives: a systematic review, a grey literature review, key informant interviews, and patient and family engagement. It is envisioned that this study will generate three outcomes: a synthesis of current evidence, a summary of gaps in knowledge, and a taxonomy of existing advance care planning decision aids. This environmental scan will demonstrate principles of patient-centered outcomes research, and it will exemplify a pioneering approach for reviewing complex interventions. Anticipated limitations are that information will be gathered from a small sample of patients and families, and that potentially relevant information could also be missing from the environmental scan due to the inclusion/exclusion criteria. Outcomes from the environmental scan will inform future patient-centered research to develop and evaluate a new decision aid.

Insurance and Quality of Care for Adults with Acute Asthma

PubMed Central

Ferris, Timothy G; Blumenthal, David; Woodruff, Prescott G; Clark, Sunday; Camargo, Carlos A

2002-01-01

OBJECTIVE The relationship between health care insurance and quality of medical care remains incompletely studied. We sought to determine whether type of patient insurance is related to quality of care and subsequent outcomes for patients who arrive in the emergency department (ED) for acute asthma. DESIGN Using prospectively collected data from the Multicenter Airway Research Collaboration, we compared measures of quality of pre-ED care, acute severity, and short-term outcomes across 4 insurance categories: managed care, indemnity, Medicaid, and uninsured. SETTING AND PARTICIPANTS Emergency departments at 57 academic medical centers enrolled 1,019 adults with acute asthma. RESULTS Patients with managed care ranked first and uninsured patients ranked last on all 7 unadjusted quality measures. After controlling for covariates, uninsured patients had significantly lower quality of care than indemnity patients for 5 of 7 measures and had lower initial peak expiratory flow rates than indemnity insured patients. Patients with managed care insurance were more likely than indemnity-insured patients to identify a primary care physician and report using inhaled steroids in the month prior to arrival in the ED. Patients with Medicaid insurance were more likely than indemnity-insured patients to use the ED as their usual source of care for problems with asthma. We found no differences in patient outcomes among the insurance categories we studied. CONCLUSIONS Uninsured patients had consistently poorer quality of care and than insured patients. Despite differences in indicators of quality of care between types of insurance, we found no differences in short-term patient outcomes by type of insurance. PMID:12472926

The Danish Schizophrenia Registry

PubMed Central

Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea; Korshøj, Lene; Voldsgaard, Inge; Nordentoft, Merete

2016-01-01

Aim of database To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research. Study population Patients diagnosed with schizophrenia and receiving mental health care in psychiatric hospitals or outpatient clinics. During the first year after the diagnosis, patients are classified as incident patients, and after this period as prevalent patients. Main variables The registry currently contains 21 clinical quality measures in relation to the following domains: diagnostic evaluation, antipsychotic treatment including adverse reactions, cardiovascular risk factors including laboratory values, family intervention, psychoeducation, postdischarge mental health care, assessment of suicide risk in relation to discharge, and assessment of global functioning. Descriptive data The recorded data are available electronically for the reporting clinicians and responsible administrative personnel, and they are updated monthly. The registry publishes the national and regional results of all included quality measures in the annual audit reports. External researchers may obtain access to the data for use in specific research projects by applying to the steering committee. Conclusion The Danish Schizophrenia Registry represents a valuable source of informative data to monitor and improve the quality of care of patients with schizophrenia in Denmark. However, continuous resources and time devoted is necessary to maintain the integrity of the registry and the validity of the data. PMID:27843348

The Danish Schizophrenia Registry.

PubMed

Baandrup, Lone; Cerqueira, Charlotte; Haller, Lea; Korshøj, Lene; Voldsgaard, Inge; Nordentoft, Merete

2016-01-01

To systematically monitor and improve the quality of treatment and care of patients with schizophrenia in Denmark. In addition, the database is accessible as a resource for research. Patients diagnosed with schizophrenia and receiving mental health care in psychiatric hospitals or outpatient clinics. During the first year after the diagnosis, patients are classified as incident patients, and after this period as prevalent patients. The registry currently contains 21 clinical quality measures in relation to the following domains: diagnostic evaluation, antipsychotic treatment including adverse reactions, cardiovascular risk factors including laboratory values, family intervention, psychoeducation, postdischarge mental health care, assessment of suicide risk in relation to discharge, and assessment of global functioning. The recorded data are available electronically for the reporting clinicians and responsible administrative personnel, and they are updated monthly. The registry publishes the national and regional results of all included quality measures in the annual audit reports. External researchers may obtain access to the data for use in specific research projects by applying to the steering committee. The Danish Schizophrenia Registry represents a valuable source of informative data to monitor and improve the quality of care of patients with schizophrenia in Denmark. However, continuous resources and time devoted is necessary to maintain the integrity of the registry and the validity of the data.

Conflicts of interest: research and clinical care.

PubMed

Morris, John C

1994-01-01

Conflicts of interest and other ethical dilemmas occur in Alzheimer disease (AD) patient care and research but often are underrecognized by physicians. One or more bioethical principles of autonomy, confidentiality, truth telling, beneficence, and justice, which apply to demented individuals as they do to other patients, may conflict in everyday clinical situations. For example, when demented patients wish to continue driving, autonomy (the patient's right to self-determination) conflicts with beneficence (the duty to promote the patient's welfare). Cognitively impaired patients depend on others for ethical decision making in the resolution of these dilemmas. It is essential that clinicians and investigators involved in the decision-making process do so without bias or conflict of interest. Full disclosure of financial interests increasingly is an accepted requirement in the conduct of biomedical research. In AD, less obvious potential conflicts of interest arise when physicians recruit their patients for antidementia drug trials sponsored by a pharmaceutical company (that provides the physician with research funding) or when investigators fail to acknowledge the patient's withdrawal of assent when attempting to complete a research protocol. The recognition of both financial and nonfinancial conflicts should lead to measures to reduce bias, which in turn will improve the integrity of research findings and promote patient welfare.

Advancing Patient-centered Outcomes in Emergency Diagnostic Imaging: A Research Agenda.

PubMed

Kanzaria, Hemal K; McCabe, Aileen M; Meisel, Zachary M; LeBlanc, Annie; Schaffer, Jason T; Bellolio, M Fernanda; Vaughan, William; Merck, Lisa H; Applegate, Kimberly E; Hollander, Judd E; Grudzen, Corita R; Mills, Angela M; Carpenter, Christopher R; Hess, Erik P

2015-12-01

Diagnostic imaging is integral to the evaluation of many emergency department (ED) patients. However, relatively little effort has been devoted to patient-centered outcomes research (PCOR) in emergency diagnostic imaging. This article provides background on this topic and the conclusions of the 2015 Academic Emergency Medicine consensus conference PCOR work group regarding "Diagnostic Imaging in the Emergency Department: A Research Agenda to Optimize Utilization." The goal was to determine a prioritized research agenda to establish which outcomes related to emergency diagnostic imaging are most important to patients, caregivers, and other key stakeholders and which methods will most optimally engage patients in the decision to undergo imaging. Case vignettes are used to emphasize these concepts as they relate to a patient's decision to seek care at an ED and the care received there. The authors discuss applicable research methods and approaches such as shared decision-making that could facilitate better integration of patient-centered outcomes and patient-reported outcomes into decisions regarding emergency diagnostic imaging. Finally, based on a modified Delphi process involving members of the PCOR work group, prioritized research questions are proposed to advance the science of patient-centered outcomes in ED diagnostic imaging. © 2015 by the Society for Academic Emergency Medicine.

The Effectiveness of Health Care Information Technologies: Evaluation of Trust, Security Beliefs, and Privacy as Determinants of Health Care Outcomes.

PubMed

Kisekka, Victoria; Giboney, Justin Scott

2018-04-11

The diffusion of health information technologies (HITs) within the health care sector continues to grow. However, there is no theory explaining how success of HITs influences patient care outcomes. With the increase in data breaches, HITs' success now hinges on the effectiveness of data protection solutions. Still, empirical research has only addressed privacy concerns, with little regard for other factors of information assurance. The objective of this study was to study the effectiveness of HITs using the DeLone and McLean Information Systems Success Model (DMISSM). We examined the role of information assurance constructs (ie, the role of information security beliefs, privacy concerns, and trust in health information) as measures of HIT effectiveness. We also investigated the relationships between information assurance and three aspects of system success: attitude toward health information exchange (HIE), patient access to health records, and perceived patient care quality. Using structural equation modeling, we analyzed the data from a sample of 3677 cancer patients from a public dataset. We used R software (R Project for Statistical Computing) and the Lavaan package to test the hypothesized relationships. Our extension of the DMISSM to health care was supported. We found that increased privacy concerns reduce the frequency of patient access to health records use, positive attitudes toward HIE, and perceptions of patient care quality. Also, belief in the effectiveness of information security increases the frequency of patient access to health records and positive attitude toward HIE. Trust in health information had a positive association with attitudes toward HIE and perceived patient care quality. Trust in health information had no direct effect on patient access to health records; however, it had an indirect relationship through privacy concerns. Trust in health information and belief in the effectiveness of information security safeguards increases perceptions of patient care quality. Privacy concerns reduce patients' frequency of accessing health records, patients' positive attitudes toward HIE exchange, and overall perceived patient care quality. Health care organizations are encouraged to implement security safeguards to increase trust, the frequency of health record use, and reduce privacy concerns, consequently increasing patient care quality. ©Victoria Kisekka, Justin Scott Giboney. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 11.04.2018.

Global Collaboration in Acute Care Clinical Research: Opportunities, Challenges, and Needs.

PubMed

Marshall, John C

2017-02-01

The most impactful research in critical care comes from trials groups led by clinician-investigators who study questions arising through the day-to-day care of critically ill patients. The success of this model reflects both "necessity"-the paucity of new therapies introduced through industry-led research-and "clinical reality"-nuanced modulation of standard practice can have substantial impact on clinically important outcomes. Success in a few countries has fueled efforts to build similar models around the world and to collaborate on an unprecedented scale in large international trials. International collaboration brings opportunity-the more rapid completion of clinical trials, enhanced generalizability of the results of these trials, and a focus on questions that have evoked international curiosity. It has changed practice, improved outcomes, and enabled an international response to pandemic threats. It also brings challenges. Investigators may feel threatened by the loss of autonomy inherent in collaboration, and appropriate models of academic credit are yet to be developed. Differences in culture, practice, ethical frameworks, research experience, and resource availability create additional imbalances. Patient and family engagement in research is variable and typically inadequate. Funders are poorly equipped to evaluate and fund international collaborative efforts. Yet despite or perhaps because of these challenges, the discipline of critical care is leading the world in crafting new models of clinical research collaboration that hold the promise of not only improving the care of the most vulnerable patients in the healthcare system but also transforming the way that we conduct clinical research.

Integrative oncology research in the Middle East: weaving traditional and complementary medicine in supportive care.

PubMed

Ben-Arye, Eran; Ali-Shtayeh, Mohammed Saleem; Nejmi, Mati; Schiff, Elad; Hassan, Esmat; Mutafoglu, Kamer; Afifi, Fatma U; Jamous, Rana Majed; Lev, Efraim; Silbermman, Michael

2012-03-01

Complementary and alternative medicine (CAM) has an important role in supportive cancer care in the Middle East and is often used in association with traditional medicine. This article provides a comprehensive review of published data on CAM research in supportive cancer care in the Middle East. A multi-disciplinary Middle-Eastern Research Group in Integrative Oncology (MERGIO) was established in six countries. Authors independently searched Medline database for articles in Arabic, Hebrew, French, and Turkish using oncology and CAM-related keywords. Articles were recorded according to the first author's affiliation with an academic or clinical institution in the Middle East. We identified 143 articles on CAM and cancer care that had been published in 12 Middle-Eastern countries. Eighty-five articles were directly related to cancer supportive care. The latter included studies on the prevalence of CAM use by patients with cancer, aspects related to of doctor-patient communication, ethics and regulation, psychosocial aspects of CAM, CAM safety and quality assurance, studies of CAM education for health care providers, and ethno-botanical studies and reviews. Twenty-eight articles referred to clinical research on supportive care, and the use of specific CAM modalities that included acupuncture, anthroposophic medicine, dietary and nutritional therapies herbal medicine, homeopathy, mind-body medicine, shiatsu, therapeutic touch, and yoga. CAM-related supportive care research is prevalent in the Middle East, a fact that may serve as a basis for future multinational-multidisciplinary research work in supportive care in oncology.

Emergency nurses' perceptions of size, frequency, and magnitude of obstacles and supportive behaviors in end-of-life care.

PubMed

Beckstrand, Renea L; Smith, Michelle D; Heaston, Sondra; Bond, A Elaine

2008-08-01

Emergency nurses care for dying patients daily. The process of dying in an emergency department can be complicated. Research on specific obstacles that impede the delivery of end-of-life care in emergency departments and behaviors that support it is limited. A 70-item questionnaire was mailed to randomly selected ENA members. Subjects were asked to rate items on the size, frequency, and magnitude of obstacles and supportive behaviors that relate to end-of-life care for ED patients. The perceived obstacles with the greatest magnitude were as follows: (a) ED nurses' work loads being too high to allow adequate time for patient care, (b) poor design of emergency departments, and (c) family members not understanding what "life-saving measures" really mean. The three highest-scoring supportive behaviors were as follows: (a) allowing family members adequate time to be alone with the patient after he or she has died; (b) having good communication between the physician and RN; and (c) providing a peaceful, dignified bedside scene for family members once the patient has died. It is hoped that the results of this study will help increase and facilitate the discussions regarding end-of-life care in emergency departments. Realistic initial implications include finding ways to decrease workloads of emergency nurses and increase direct patient care. Another important implication would be the improvement of ED designs. Further research in the area of end-of-life care in emergency settings is recommended.

The Impact of the Patient-Centered Medical Home on Health Care Disparities: Exploring Stakeholder Perspectives on Current Standards and Future Directions.

PubMed

De Marchis, Emilia H; Doekhie, Kirti; Willard-Grace, Rachel; Olayiwola, J Nwando

2018-06-19

Over the past decade, the Patient-Centered Medical Home (PCMH) has become a preeminent model for primary care delivery. Simultaneously, health care disparities have gained increasing attention. There has been limited research on whether and how the PCMH can or should affect health care disparities. The authors conducted qualitative interviews with key stakeholders and experts on the PCMH model and health care disparities, including grant and policy makers, accreditors, researchers, patient advocates, primary care practices, practice transformation organizations, and payers, to assess perspectives on the role of the PCMH in addressing health care disparities. The application of grounded theory and thematic analysis elucidated best practice recommendations for the PCMH model's role in addressing health care disparities. Although the majority of stakeholders support greater integration of efforts to reduce health care disparities into the PCMH model, most stakeholders view the current PCMH model as having minimal or indirect influence on health care disparities. The majority supported greater integration of efforts to reduce health care disparities into the PCMH model. As the PCMH model continues to be refined, and as the health care system strives toward improving population health, there must be reflection on the policies and delivery systems that impact health care disparities.

Oral health and care in the intensive care unit: state of the science.

PubMed

Munro, Cindy L; Grap, Mary Jo

2004-01-01

Oral health is influenced by oral microbial flora, which are concentrated in dental plaque. Dental plaque provides a microhabitat for organisms and an opportunity for adherence of the organisms to either the tooth surface or other microorganisms. In critically ill patients, potential pathogens can be cultured from the oral cavity. These microorganisms in the mouth can translocate and colonize the lung, resulting in ventilator-associated pneumonia. The importance of oral care in the intensive care unit has been noted in the literature, but little research is available on mechanical or pharmacological approaches to reducing oral microbial flora via oral care in critically ill adults. Most research in oral care has been directed toward patients' comfort; the microbiological and physiological effects of tooth brushing in the intensive care unit have not been reported. Although 2 studies indicated reductions in rates of ventilator-associated pneumonia in cardiac surgery patients who received chlorhexidine before intubation and postoperatively, the effects of chlorhexidine in reducing ventilator-associated pneumonia in other populations of critically ill patients or its effect when treatment with the agent initiated after intubation have not been reported. In addition, no evaluation of the effectiveness of pharmacological and mechanical interventions relative to each other or in combination has been published. Additional studies are needed to develop and test best practices for oral care in critically ill patients.

National Institute of Biomedical Imaging and Bioengineering Point-of-Care Technology Research Network: Advancing Precision Medicine

PubMed Central

Ford Carleton, Penny; Parrish, John A.; Collins, John M.; Crocker, J. Benjamin; Dixon, Ronald F.; Edgman-Levitan, Susan; Lewandrowski, Kent B.; Stahl, James E.; Klapperich, Catherine; Cabodi, Mario; Gaydos, Charlotte A.; Rompalo, Anne M.; Manabe, Yukari; Wang, Tza-Huei; Rothman, Richard; Geddes, Chris D.; Widdice, Lea; Jackman, Joany; Mathura, Rishi A.; Lash, Tiffani Bailey

2016-01-01

To advance the development of point-of-care technology (POCT), the National Institute of Biomedical Imaging and Bioengineering established the POCT Research Network (POCTRN), comprised of Centers that emphasize multidisciplinary partnerships and close facilitation to move technologies from an early stage of development into clinical testing and patient use. This paper describes the POCTRN and the three currently funded Centers as examples of academic-based organizations that support collaborations across disciplines, institutions, and geographic regions to successfully drive innovative solutions from concept to patient care. PMID:27730014