Labor unions in medicine: the intersection of patient advocacy and self-advocacy.

PubMed

Manthous, Constantine A

2014-05-01

Labor unions have been a weak force in the medical marketplace. To briefly review the history of physicians' and nurses' labor unions, explore the ethics of unions in medicine, and offer a solution that simultaneously serves patients and professionals. A selective review of the literature. Labor unions of medical professionals pose an ethical quandary, that is a tension between selfless patient advocacy versus self-advocacy. The primary role of labor unions has been to extract from management benefits for employees. The threat of work actions is the primary tool that labor unions can apply to encourage management to negotiate mutually acceptable conditions of employment. Work actions-namely slow-downs and strikes-may harm patients and may therefore run afoul of professionals' primary duty to the primacy of patients' welfare. An alternative model is offered wherein medical unions align self-centered and patient-centered interests and leverage the Public Good, in the form of public opinion, to encourage good-faith bargaining with management. As medicine becomes increasingly corporatized, physicians will join nurses in "at-will employment" arrangements whereby self-advocacy and patient advocacy may be impacted. Although labor unions have been a means of counterbalancing unchecked discretion of corporate management, conventional labor unions may run afoul of medical ethical principles. Reconsideration and innovation, to address this ethical dilemma, could provide a solution that aligns both clinicians' and patients' welfare.

The impact of patient advocacy: the University of California-San Francisco experience.

PubMed

Carroll, Peter R

2004-11-01

Although the principal goals of health care advocacy are to raise awareness of specific issues and make them national priorities, it is important that physicians should recognize that advocacy is a multidimensional phenomenon. In 1997 a group of scientists, administrators, clinicians and patients met to discuss individual goals, needs and areas of mutual interest in the areas of prostate cancer care and research. A formal advocacy group was established and advocates were integrated into the administration and planning process in specific areas of the clinical and research program. In an effort to quantitate and communicate the impact of this group we assessed outcomes in the last 5 years in 4 areas matched to group interests and priorities, namely research, clinical trials, patient services and philanthropy. Improvements in all assessed metrics were noted (18% to 1,796%), most substantially in the areas of research grants (286%) and philanthropy (1,796%). The highlight of the collaborative effort was the awarding of the University of California-San Francisco Prostate Cancer SPORE, which included a highly rated, formal advocacy core. Advocates initiated at least 25 new initiatives to improve patient services in the areas of access to care, patient education, psychosocial support, outreach, etc. Since the initiation of a prostate cancer advocacy effort at our institution, substantial and quantitative improvements in several key metrics have been identified. Although an exact cause and effect cannot be stated with certainty, it seems likely. The successful collaboration was based on a multidimensional patient advocacy effort.

Comparison of the Availability and Cost of Foods Compatible With a Renal Diet Versus an Unrestricted Diet Using the Nutrition Environment Measures Survey.

PubMed

Sullivan, Catherine M; Pencak, Julie A; Freedman, Darcy A; Huml, Anne M; León, Janeen B; Nemcek, Jeanette; Theurer, Jacqueline; Sehgal, Ashwini R

2017-05-01

Hemodialysis patients' ability to access food that is both compatible with a renal diet and affordable is affected by the local food environment. Comparisons of the availability and cost of food items suitable for the renal diet versus a typical unrestricted diet were completed using the standard Nutrition Environment Measures Survey and a renal diet-modified Nutrition Environment Measures Survey. Cross-sectional study. Twelve grocery stores in Northeast Ohio. Availability and cost of food items in 12 categories. The mean total number of food items available differed significantly (P ≤ .001) between the unrestricted diet (38.9 ± 4.5) and renal diet (32.2 ± 4.7). The mean total cost per serving did not differ significantly (P = 0.48) between the unrestricted diet ($5.67 ± 2.50) and renal diet ($5.76 ± 2.74). The availability of renal diet food items is significantly less than that of unrestricted diet food items, but there is no difference in the cost of items that are available in grocery stores. Further work is needed to determine how to improve the food environment for patients with chronic diseases. Copyright © 2017 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.

Twenty-First Century Pathologists' Advocacy.

PubMed

Allen, Timothy Craig

2017-07-01

Pathologists' advocacy plays a central role in the establishment of continuously improving patient care quality and patient safety, and in the maintenance and progress of pathology as a profession. Pathology advocacy's primary goal is the betterment of patient safety and quality medical care; however, payment is a necessary and appropriate component to both, and has a central role in advocacy. Now is the time to become involved in pathology advocacy; the Medicare Access and Children's Health Insurance Program (CHIP) Reauthorization Act of 2015 (MACRA) and the Protecting Access to Medicare Act of 2014 (PAMA) are 2 of the most consequential pieces of legislation impacting the pathology and laboratory industry in the last 20 years. Another current issue of far-reaching impact for pathologists is balance billing, and yet many pathologists have little or no understanding of balance billing. Pathologists at all stages of their careers, and in every professional setting, need to participate. Academic pathologists have a special obligation to, if not become directly involved in advocacy, at least have a broad and current understanding of those issues, as well as the need and responsibility of pathologists to actively engage in advocacy efforts to address them, in order to teach residents the place of advocacy, and its value, as an inseparable and indispensable component of their professional responsibilities.

The effect of routine availability of sugammadex on postoperative respiratory complications: a historical cohort study.

PubMed

Olesnicky, Benjamin L; Traill, Catherine; Marroquin-Harris, Frank B

2017-03-01

Postoperative residual curarisationf is a preventable cause of postoperative morbidity. Although sugammadex has been shown to reduce the risk of residual curarisation, it has not yet been shown if this directly translates to a reduction in morbidity. We aimed to demonstrate whether the introduction of unrestricted sugammadex for routine reversal changed the incidence of post-operative respiratory diagnoses and the rate of airway and respiratory complications in the post-operative care unit. A historical cohort study of 1257 patients who underwent general surgical or ear, nose and throat (ENT) procedures before and after the introduction of unrestricted availability of sugammadex. Patient records were used to identify the incidence of postoperative in-hospital respiratory diagnoses and of airway complications in PACU, the pattern of muscle relaxant use and the relative costs associated with the routine availability of sugammadex. Unrestricted sugammadex availability was associated with a significant reduction in the rate of a postoperative in-hospital respiratory diagnosis; Odds Ratio (OR) = 0.20 (95%CI 0.05-0.72, p=0.01). Furthermore, the use of sugammadex itself was also associated with a reduction in inhospital respiratory diagnoses; OR = 0.26 (95%CI 0.08-0.94, p=0.04). Unrestricted sugammadex was also associated with a decrease in the need for manual airway support in the recovery room (3.2% vs 1.1%, p=0.02) and a decrease in patients being transferred intubated to ICU (5.5% vs 1.3%, p<0.001). Unrestricted sugammadex availability is associated with a reduction in post-operative respiratory complications. A well-designed, prospective randomised trial is needed to provide further validation of the data.

Cochlear Implants

MedlinePlus

... Governance Diversity Honorary Awards & Lectures Employment Opportunities Renting Space Advocacy Home ENT PAC foundation Guidelines Patient Health ... Governance Diversity Honorary Awards & Lectures Employment Opportunities Renting Space Advocacy Home ENT PAC foundation Guidelines Patient Health ...

Postoperative nausea and vomiting after unrestricted clear fluids before day surgery: A retrospective analysis.

PubMed

McCracken, Graham C; Montgomery, Jane

2018-05-01

Guidance on pre-operative fluids fasting policy continues to evolve. Current European guidelines encourage the intake of oral fluids up to 2 h before the induction of general anaesthesia. From October 2014, Torbay Hospital Day Surgery Unit commenced an unrestricted fluid policy, encouraging patients to drink clear fluids up until the time of transfer to theatre. The aim of this study was to assess the incidence of postoperative nausea and vomiting before and after the change to the unrestricted pre-operative clear oral fluids. Retrospective, before and after study. Single district general hospital between November 2013 and February 2016. A total of 11 500 patients on the day case pathway who were receiving either sedation, general anaesthesia, regional anaesthesia or their combination. The data from these patients were collected routinely. This number of patients represents approximately 78% of all patients before the change in fluids policy and 74% after the change. Exclusions were patients undergoing a termination of pregnancy, or patients undergoing community dental procedures, from whom patient experience data are not collected. Introduction of a change to the day surgery pathway policy permitting unrestricted clear oral fluids preoperatively until transfer to theatre (from October 2014). Incidence of postoperative nausea and vomiting. The rates of nausea within 24 h postoperatively were 270/5192 (5.2%) when patients could not drink within 2 h of surgery, and 179/4724 (3.8%) when patients could drink up until surgery, a relative rate (95% confidence interval) of 0.73 (0.61 to 0.88), P = 0.00074. The corresponding rates of vomiting were 146/5186 (2.8%) and 104/4716 (2.2%), a relative rate (95% confidence interval) of 0.78 (0.61 to 1.00), P = 0.053. Our data suggest that the liberal consumption of clear fluids before the induction of scheduled day case anaesthesia reduced the rates of postoperative nausea and vomiting.

Significantly lower incidence of early definite stent thrombosis of drug-eluting stents after unrestricted use in Japan using ticlopidine compared to western countries using clopidogrel: a retrospective comparison with western mega-studies.

PubMed

Ishikawa, Tetsuya; Nakano, Yosuke; Endoh, Akira; Kubota, Takeyuki; Suzuki, Teruhiko; Nakata, Koutarou; Miyamoto, Takashi; Murakami, Michiaki; Sakamoto, Hiroshi; Imai, Kamon; Mochizuki, Seibu; Yoshimura, Michihiro; Mutoh, Makoto

2009-10-01

The incidence of definite stent thrombosis (ST) after use of drug-eluting stents (DES), as defined by the Academic Research Consortium, is known to be lower in Japan than in western countries. However, a statistical difference in the incidence of early definite ST (EDST) associated with the unrestricted use of DES has not yet been documented. Therefore, the incidence of EDST in our Japanese institute after unrestricted use of DES was retrospectively compared with those reported in western mega-studies. During the 40 months from August 2004 to November 2007 (before approval of clopidogrel in Japan), DES were implanted in 3605 lesions in 1885 patients in our institute; lesion- and patient-associated percentages of DES use were 95.2% and 94.7%, respectively. Mean stent length per lesion was 33.2 mm, emergent procedures and ST-elevation myocardial infarctions made up 33.7% and 16.4% of the procedures, respectively, intravascular ultrasonography was used 96.0% of the time, a distal protection device for acute coronary syndrome was used 68.7% of the time, and the mean maximum inflation pressure was 19.5 atm. EDST was observed in five lesions (0.139%) in four patients (0.212%). The incidence of patient-associated EDST at our center was significantly lower than in four western mega-studies (0.736%, 66 of 8970 patients; 0.634%, 149 of 23,500; 0.595%, 52 of 8402; 0.997%, 20 of 2006) (p<0.05, <0.01, <0.05, <0.01, respectively, using a chi(2)-test). Due to differences in procedural approaches in Japan, the incidence of EDST after unrestricted use of DES was significantly lower than in western countries.

Conflicting Orientations to Patient Advocacy in Long-Term Care.

ERIC Educational Resources Information Center

Litwin, Howard; And Others

1984-01-01

Analyzed national survey data on nursing home ombudsman programs to document three alternative formulations of advocacy: (1) individualized/developmentally focused; (2) individualized/patients' rights-focused, and (3) facility/patients' rights-focused. Programmatic efforts will be required to address disparities in conceptions of appropriate…

75 FR 55831 - Advisory Committee on the Medical Uses of Isotopes: Call for Nominations

Federal Register 2010, 2011, 2012, 2013, 2014

2010-09-14

... professional or personal experience with or knowledge about patient advocacy. Also, involvement or leadership..., involvement and/or leadership with patient advocacy organizations, and other information obtained in letters...

Challenges Facing Global Health Networks: The NCD Alliance Experience Comment on "Four Challenges that Global Health Networks Face".

PubMed

Dain, Katie

2017-08-07

Successful prevention and control of the epidemic of noncommunicable diseases (NCDs) cannot be achieved by the health sector alone: a wide range of organisations from multiple sectors and across government must also be involved. This requires a new, inclusive approach to advocacy and to coordinating, convening and catalysing action across civil society, best achieved by a broad-based network. This comment maps the experience of the NCD Alliance (NCDA) on to Shiffman's challenges for global health networks - framing (problem definition and positioning), coalition-building and governance - and highlights some further areas overlooked in his analysis. © 2018 The Author(s); Published by Kerman University of Medical Sciences. This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Epilepsy health consumer groups and charities; how representative of patients are they? The results of a pilot study.

PubMed

Grinton, M; Leavy, Y; Ahern, D; Hughes, F; Duncan, S

2013-07-01

In the United Kingdom all health care providers are encouraged to consult with user groups. The submissions of charities and patient advocacy groups to NICE and SIGN are considered reflective of the patient groups they purport to represent, yet little is known about how representative they are. This pilot study was designed to ascertain how many patients attending a hospital based epilepsy clinic were members of such advocacy groups. Patients were asked to complete a brief 9-question questionnaire before they left the clinic. One hundred and twenty-five questionnaires were distributed, of which 101 were returned. Seventeen percent of patients were members of advocacy groups, with several being members of more than one charity/group. Only seven percent of the respondents had ever been contacted by an advocacy group to canvass their opinions. Seventy percent of patients questioned stated they thought a frank discussion with their physician, or specialist nurse was more likely to influence patient services. Patients with long duration of disease and taking multiple anti-epileptic drugs were more likely to be members of charity/advocacy groups. As patient charities in the U.K. are often in receipt of public funds, and actively seek to influence public policy this raises the question of whether they should be required to consult more widely with the people they claim to represent. Copyright © 2012 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.

Legislating for advocacy: The case of whistleblowing.

PubMed

Watson, Chanel L; O'Connor, Tom

2017-05-01

The role of nurses as patient advocates is one which is well recognised, supported and the subject of a broad body of literature. One of the key impediments to the role of the nurse as patient advocate is the lack of support and legislative frameworks. Within a broad range of activities constituting advocacy, whistleblowing is currently the subject of much discussion in the light of the Mid Staffordshire inquiry in the United Kingdom (UK) and other instances of patient mistreatment. As a result steps to amend existing whistleblowing legislation where it exists or introduce it where it does not are underway. This paper traces the development of legislation for advocacy. The authors argue that while any legislation supporting advocacy is welcome, legislation on its own will not encourage or enable nurses to whistleblow.

The patient-consumer-advocate nexus: the marketing and dissemination of gardasil, the human papillomavirus vaccine, in the United States.

PubMed

Gottlieb, Samantha D

2013-09-01

The 2006 availability of Merck's human papillomavirus (HPV) vaccine, Gardasil, in the United States provides an opportunity to examine the pharmaceutical company's creation of patient awareness for one of the most common sexually transmitted infections and its related cancer. In spite of the ubiquity of gynecological screening, prior to the vaccine's dissemination, most U.S. women were not familiar with either the infection or its association with cancer. Merck's role in encouraging a patient advocacy community mimics existing breast cancer patient advocacy culture in the United States while also demonstrating marked popular culture differences between the two women's health concerns and their respective advocacy groups. This article draws on ethnographic fieldwork with an HPV/cervical cancer advocacy organization to demonstrate how the group and its members engaged in an activism of awareness that disavows larger political aims. © 2013 by the American Anthropological Association.

Development and testing of an instrument to measure protective nursing advocacy.

PubMed

Hanks, Robert G

2010-03-01

Patient advocacy is an important aspect of nursing care, yet there are few instruments to measure this essential function. This study was conducted to develop, determine the psychometric properties, and support validity of the Protective Nursing Advocacy Scale (PNAS), which measures nursing advocacy beliefs and actions from a protective perspective. The study used a descriptive correlational design with a systematically selected sample of 419 medical-surgical registered nurses. Analysis of the 43-item instrument was conducted using principal components analysis with promax rotation, which resulted in the items loading onto four components. The four subscales have sufficient internal consistency, as did the overall PNAS. Satisfactory evidence of construct, content, and convergent validity were determined. Implications for nursing practice include using the PNAS in conjunction with an educational program to enhance advocacy skills, which may help to improve patient outcomes.

Neuromuscular Evaluation With Single-Leg Squat Test at 6 Months After Anterior Cruciate Ligament Reconstruction

PubMed Central

Hall, Michael P.; Paik, Ronald S.; Ware, Anthony J.; Mohr, Karen J.; Limpisvasti, Orr

2015-01-01

Background: Criteria for return to unrestricted activity after anterior cruciate ligament (ACL) reconstruction varies, with some using time after surgery as the sole criterion—most often at 6 months. Patients may have residual neuromuscular deficits, which may increase the risk of ACL injury. A single-leg squat test (SLST) can dynamically assess for many of these deficits prior to return to unrestricted activity. Hypothesis: A significant number of patients will continue to exhibit neuromuscular deficits with SLST at 6 months after ACL reconstruction. Study Design: Cross-sectional study; Level of evidence, 3. Methods: Patients using a standardized accelerated rehabilitation protocol at their 6-month follow-up after primary ACL reconstruction were enrolled. Evaluation included bilateral SLST, single-leg hop distance, hip abduction strength, and the subjective International Knee Documentation Committee (IKDC) score. Results: Thirty-three patients were enrolled. Poor performance of the operative leg SLST was found in 15 of 33 patients (45%). Of those 15 patients, 7 (45%) had concomitant poor performance of the nonoperative leg compared with 2 of 18 patients (11%) in those who demonstrated good performance in the operative leg. The poor performers were significantly older (33.6 years) than the good performers (24.2 years) (P = .007). Those with poor performance demonstrated decreased hip abduction strength (17.6 kg operative leg vs 20.5 kg nonoperative leg) (P = .024), decreased single-leg hop distance (83.3 cm operative leg vs 112.3 cm nonoperative leg) (P = .036), and lower IKDC scores (67.9 vs 82.3) (P = .001). Conclusion: Nearly half of patients demonstrated persistent neuromuscular deficits on SLST at 6 months, which is when many patients return to unrestricted activity. Those with poor performance were of a significantly older age, decreased hip abduction strength, decreased single-leg hop distance, and lower IKDC subjective scores. Clinical Relevance: The SLST can be used to identify neuromuscular risk factors for ACL rupture. Many patients at 6 months have persistent neuromuscular deficits on SLST. Caution should be used when using time alone to determine when patients can return to unrestricted activity. PMID:26665033

Financial stability in biobanking: unique challenges for disease-focused foundations and patient advocacy organizations.

PubMed

Bromley, Russell L

2014-10-01

In the last decade, many disease-focused foundations and patient advocacy organizations that support biomedical research have created patient registries and biobanks. This article reviews the motivations behind the creation of those biobanks and how they are different from biobanks sponsored by government or industry. It also discusses some of the different funding models being employed by these organizations. Finally, it highlights some of the unique challenges faced by disease-focused foundations and advocacy organizations that sponsor biobanks, and how they are overcoming those challenges to achieve both financial and operational sustainability.

From Individuals to International Policy: Achievements and Ongoing Needs in Diabetes Advocacy

PubMed Central

Oser, Sean M.; Close, Kelly L.; Liu, Nancy F.; Hood, Korey K.; Anderson, Barbara J.

2015-01-01

Diabetes impacts tens of millions of people in the United States of America and 9 % of the worldwide population. Given the public health implications and economic burden of diabetes, the needs of people with diabetes must be addressed through strategic and effective advocacy efforts. Diabetes advocacy aims to increase public awareness about diabetes, raise funds for research and care, influence policy impacting people with diabetes, and promote optimal individual outcomes. We present a framework for diabetes advocacy activities by individuals and at the community, national, and international levels and identify challenges and gaps in current diabetes advocacy. Various groups have organized successful diabetes advocacy campaigns toward these goals, and lessons for further advancing diabetes advocacy can be learned from other health-related populations. Finally, we discuss the role of healthcare providers and mental/behavioral health professionals in advocacy efforts that can benefit their patients and the broader population of people with diabetes. PMID:26194156

Effectiveness of narrative pedagogy in developing student nurses' advocacy role.

PubMed

Gazarian, Priscilla K; Fernberg, Lauren M; Sheehan, Kelly D

2016-03-01

The literature and research on nursing ethics and advocacy has shown that generally very few nurses and other clinicians will speak up about an issue they have witnessed regarding a patient advocacy concern and that often advocacy in nursing is not learned until after students have graduated and begun working. To evaluate the effectiveness of narrative pedagogy on the development of advocacy in student nurses, as measured by the Protective Nursing Advocacy Scale. We tested the hypothesis that use of a narrative pedagogy assignment related to ethics would improve student nurse's perception of their advocacy role as measured by the Protective Nursing Advocacy Scale using a quasi-experimental nonrandomized study using a pre-test, intervention, post-test design. Data collection occurred during class time from October 2012 to December 2012. The Protective Nursing Advocacy Scale tool was administered to students in class to assess their baseline and was administered again at the completion of the educational intervention to assess whether narrative pedagogy was effective in developing the nursing student's perception of their role as a patient advocate. Students were informed that their participation was voluntary and that the data collected would be anonymous and confidential. The survey was not a graded assignment, and students did not receive any incentive to participate. The institutional review board of the college determined the study to be exempt from review. School of Nursing at a small liberal arts college in the Northeastern United States. A consecutive, nonprobability sample of 44 senior-level nursing students enrolled in their final nursing semester was utilized. Results indicated significant differences in student nurse's perception of their advocacy role related to environment and educational influences following an education intervention using an ethics digital story. Using the Protective Nursing Advocacy Scale, we were able to measure the effectiveness of narrative pedagogy on nursing student's perception of the nurse's advocacy role. © The Author(s) 2014.

Enhancing patient well-being: advocacy or negotiation?

PubMed Central

Bird, A W

1994-01-01

The United Kingdom Central Council for Nursing, Midwifery and Health Visitors (UKCC) document, Exercising Accountability, states that the role of patient's advocate is an essential aspect of good professional nursing practice (1). The author examines the case for and against the nurse being the best person to act as advocate, and critically evaluates the criteria of advocacy. The problematic moral issues arising are discussed, and a case made for negotiation between the members of the multidisciplinary team and the patient/client (or a significant person to the patient) in order to promote the well-being of the patient and to minimise suffering. She concludes that the health care professional's (including the nurse's) role is to help people to assert control over the factors which affect their lives, that is empowerment, rather than advocacy. PMID:7996560

The Advocacy Portfolio: A Standardized Tool for Documenting Physician Advocacy.

PubMed

Nerlinger, Abby L; Shah, Anita N; Beck, Andrew F; Beers, Lee S; Wong, Shale L; Chamberlain, Lisa J; Keller, David

2018-01-02

Recent changes in health care delivery systems and in medical training have primed academia for a paradigm shift, with strengthened support for an expanded definition of scholarship. Physicians who consider advocacy to be relevant to their scholarly endeavors need a standardized format to display activities and measure the value of health outcomes to which their work can be attributed. Similar to the Educator Portfolio, the authors here propose the Advocacy Portfolio (AP) to document a scholarly approach to advocacy.Despite common challenges faced in the arguments for both education and advocacy to be viewed as scholarship, the authors highlight inherent differences between the two fields. Based on prior literature, the authors propose a broad yet comprehensive set of domains to categorize advocacy activities, including advocacy engagement, knowledge dissemination, community outreach, advocacy teaching/mentoring, and advocacy leadership/administration. Documenting quality, quantity, and a scholarly approach to advocacy within each domain is the first of many steps to establish congruence between advocacy and scholarship for physicians utilizing the AP format.This standardized format can be applied in a variety of settings, from medical training to academic promotion. Such documentation will encourage institutional buy-in by aligning measured outcomes with institutional missions. The AP will also provide physician advocates with a method to display the impact of advocacy projects on health outcomes for patients and populations. Future challenges to broad application include establishing institutional support and developing consensus regarding criteria by which to evaluate the contributions of advocacy activities to scholarship.

Bioethics, Human Rights, and Childbirth.

PubMed

Erdman, Joanna

2015-06-11

The global reproductive justice community has turned its attention to the abuse and disrespect that many women suffer during facility-based childbirth. In 2014, the World Health Organization released a statement on the issue, endorsed by more than 80 civil society and health professional organizations worldwide.The statement acknowledges a growing body of research that shows widespread patterns of women's mistreatment during labor and delivery-physical and verbal abuse, neglect and abandonment, humiliation and punishment, coerced and forced care-in a range of health facilities from basic rural health centers to tertiary care hospitals. Moreover, the statement characterizes this mistreatment as a human rights violation. It affirms: "Every woman has the right to the highest attainable standard of health, which includes the right to dignified, respectful health care throughout pregnancy and childbirth."The WHO statement and the strong endorsement of it mark a critical turn in global maternal rights advocacy. It is a turn from the public health world of systems and resources in preventing mortality to the intimate clinical setting of patient and provider in ensuring respectful care. Copyright 2015 Erdman. This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original author and source are credited.

Advocacy: Perspectives of Future Nurse Administrators.

PubMed

OʼConnor, Mary

Advocacy is a core competency of the nurse, and especially the nurse leader. It is a multidimensional concept that requires knowledge, experience, self-confidence, and above all, courage. This article describes and illustrates the perspectives of nursing administration graduate students, as they depict advocacy in many relationships. These include advocacy for the patient, family, self, community, organization, profession, and society. The themes that emerged from narratives written by these nurse leaders were the development of courage and the finding of their voices. Stories demonstrate participants' courage to speak up despite feeling conflicted due to issues of autonomy, moral distress, or fear of retribution. Implications for nurse administrators to support advocacy at all levels are presented.

The impact of parent advocacy groups, the Internet, and social networking on rare diseases: the IDEA League and IDEA League United Kingdom example.

PubMed

Black, Angela P; Baker, Marie

2011-04-01

The development of the Internet and subsequent evolution of social networking has significantly changed the effectiveness of patient advocacy groups for rare diseases. The greatest degree of change has occurred at the patient level, with an increased ability of affected individuals to share experiences and support, and to raise public awareness. Other changes have occurred, not only in the way rare diseases are diagnosed, studied, and treated, but also in how they are addressed at the level of legislation and public policy. The International Dravet syndrome Epilepsy Action League (IDEA League) is the leading patient advocacy organization for Dravet syndrome and related genetic ion-channel epilepsy disorders (hereafter referred to as Dravet syndrome or severe myoclonic epilepsy of infancy, SMEI). The IDEA League's mission encompasses international support and outreach for patients and families, as well as collaboration with physicians, medical education, health care coordination, and research. The IDEA League is an excellent example of the impact of patient advocacy groups, the Internet, and social networking on the landscape of rare diseases. Wiley Periodicals, Inc. © 2011 International League Against Epilepsy.

Hospice and Palliative Nurses Association

MedlinePlus

... Press Release Patients & Families About Serious Illness Certified Nurses are Everywhere Advocacy Palliative Nursing Summit Recent Activity ... Principles State Ambassadors Advocacy Resources Healthcare Resources Certified Nurses Day Certified Nurses are Everywhere Certification is Transformational ...

A pilot study of selected Japanese nurses' ideas on patient advocacy.

PubMed

Davis, Anne J; Konishi, Emiko; Tashiro, Marie

2003-07-01

This pilot study had two purposes: (1) to review recent Japanese nursing literature nursing advocacy; and (2) to obtain data from nurses on advocacy. For the second purpose, 24 nurses at a nursing college in Japan responded to a questionnaire. The concept of advocacy, taken from the West, has become an ethical ideal for Japanese nurses but one that they do not always understand, or, if they do, they find it difficult to fulfil. They cite nursing leadership support as necessary to enacting this role. Discussion on meaning of and the rationale for advocacy in a society where goodness or badness is relative to social situations and its impact may reveal two parallel but overlapping views of morality. Such a situation would not only influence notions of advocacy but also possibly render them more complex.

Additional Insights Into Problem Definition and Positioning From Social Science Comment on "Four Challenges That Global Health Networks Face".

PubMed

Quissell, Kathryn

2017-09-10

Commenting on a recent editorial in this journal which presented four challenges global health networks will have to tackle to be effective, this essay discusses why this type of analysis is important for global health scholars and practitioners, and why it is worth understanding and critically engaging with the complexities behind these challenges. Focusing on the topics of problem definition and positioning, I outline additional insights from social science theory to demonstrate how networks and network researchers can evaluate these processes, and how these processes contribute to better organizing, advocacy, and public health outcomes. This essay also raises multiple questions regarding these processes for future research. © 2018 The Author(s); Published by Kerman University of Medical Sciences. This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Lymphoma Research Foundation

MedlinePlus

... Trials Patient Education Conferences Webcasts and Podcasts Teleconferences Financial Assistance Support and Resources Professional Education Take Action Become an Advocate Public Policy and Advocacy News Action Center Advocacy Tool Kit Research LRF Research Portfolio Disease-Specific Focus ...

Validation of the Policy Advocacy Engagement Scale for frontline healthcare professionals.

PubMed

Jansson, Bruce S; Nyamathi, Adeline; Heidemann, Gretchen; Duan, Lei; Kaplan, Charles

2017-05-01

Nurses, social workers, and medical residents are ethically mandated to engage in policy advocacy to promote the health and well-being of patients and increase access to care. Yet, no instrument exists to measure their level of engagement in policy advocacy. To describe the development and validation of the Policy Advocacy Engagement Scale, designed to measure frontline healthcare professionals' engagement in policy advocacy with respect to a broad range of issues, including patients' ethical rights, quality of care, culturally competent care, preventive care, affordability/accessibility of care, mental healthcare, and community-based care. Cross-sectional data were gathered to estimate the content and construct validity, internal consistency, and test-retest reliability of the Policy Advocacy Engagement Scale. Participants and context: In all, 97 nurses, 94 social workers, and 104 medical residents (N = 295) were recruited from eight acute-care hospitals in Los Angeles County. Ethical considerations: Informed consent was obtained via Qualtrics and covered purposes, risks and benefits; voluntary participation; confidentiality; and compensation. Institutional Review Board approval was obtained from the University of Southern California and all hospitals. Results supported the validity of the concept and the instrument. In confirmatory factor analysis, seven items loaded onto one component with indices indicating adequate model fit. A Pearson correlation coefficient of .36 supported the scale's test-retest stability. Cronbach's α of .93 indicated strong internal consistency. The Policy Advocacy Engagement Scale demonstrated satisfactory psychometric properties in this initial test. Findings should be considered within the context of the study's limitations, which include a low response rate and limited geographic scope. The Policy Advocacy Engagement Scale appears to be the first validated scale to measure frontline healthcare professionals' engagement in policy advocacy. With it, researchers can analyze variations in professionals' levels of policy advocacy engagement, understand what factors are associated with it, and remedy barriers that might exist to their provision of it.

Advocacy for the Provision of Dental Hygiene Services Within the Hospital Setting: Development of a Dental Hygiene Student Rotation.

PubMed

Juhl, Jacqueline A; Stedman, Lynn

2016-06-01

Educational preparation of dental hygiene students for hospital-based practice, and advocacy efforts promote inclusion of dental hygienists within hospital-based interdisciplinary health care teams. Although the value of attending to the oral care needs of patients in critical care units has been recognized, the potential impact of optimal oral health care for the general hospital population is now gaining attention. This article describes a hospital-based educational experience for dental hygiene students and provides advocacy strategies for inclusion of dental hygienists within the hospital interdisciplinary team. The dental hygienist authors, both educators committed to evidence-based oral health care and the profession of dental hygiene, studied hospital health care and recognized a critical void in oral health care provision within that setting. They collaboratively developed and implemented a hospital-based rotation within the curriculum of a dental hygiene educational program and used advocacy skills to encourage hospital administrators to include a dental hygiene presence within hospital-based care teams. Hospital-based dental hygiene practice, as part of interprofessional health care delivery, has the potential to improve patient well-being, shorten hospital stays, and provide fiscal savings for patients, institutions, and third party payers. Advocacy efforts can promote dental hygienists as members of hospital-based health care teams. Further research is needed to document: (1) patient outcomes resulting from optimal oral care provision in hospitals; (2) best ways to prepare dental hygienists for career opportunities within hospitals and other similar health care settings; and (3) most effective advocacy strategies to promote inclusion of dental hygienists within care teams. Copyright © 2016 Elsevier Inc. All rights reserved.

The voice of Florence Nightingale on advocacy.

PubMed

Selanders, Louise C; Crane, Patrick C

2012-01-31

Modern nursing is complex, ever changing, and multi focused. Since the time of Florence Nightingale, however, the goal of nursing has remained unchanged, namely to provide a safe and caring environment that promotes patient health and well being. Effective use of an interpersonal tool, such as advocacy, enhances the care-giving environment. Nightingale used advocacy early and often in the development of modern nursing. By reading her many letters and publications that have survived, it is possible to identify her professional goals and techniques. Specifically, Nightingale valued egalitarian human rights and developed leadership principles and practices that provide useful advocacy techniques for nurses practicing in the 21st century. In this article we will review the accomplishments of Florence Nightingale, discuss advocacy in nursing and show how Nightingale used advocacy through promoting both egalitarian human rights and leadership activities. We will conclude by exploring how Nightingale's advocacy is as relevant for the 21st century as it was for the 19th century.

Patient financial management as a community benefit.

PubMed

Shank, Corey

2007-03-01

Steps to take in documenting medical assistance advocacy include: Designating the program as a social service, not a collections effort. Detailing the program's practices. Identifying outcomes. Sharing the impact of advocacy efforts with the community.

Ophthalmology on social networking sites: an observational study of Facebook, Twitter, and LinkedIn.

PubMed

Micieli, Jonathan A; Tsui, Edmund

2015-01-01

The use of social media in ophthalmology remains largely unknown. Our aim was to evaluate the extent and involvement of ophthalmology journals, professional associations, trade publications, and patient advocacy and fundraising groups on social networking sites. An archived list of 107 ophthalmology journals from SCImago, trade publications, professional ophthalmology associations, and patient advocacy organizations were searched for their presence on Facebook, Twitter, and LinkedIn. Activity and popularity of each account was quantified by using the number of "likes" on Facebook, the number of followers on Twitter, and members on LinkedIn. Of the 107 journals ranked by SCImago, 21.5% were present on Facebook and 18.7% were present on Twitter. Journal of Community Eye Health was the most popular on Facebook and JAMA Ophthalmology was most popular on Twitter. Among the 133 members of the International Council of Ophthalmology, 17.3% were present on Facebook, 12.8% were present on Twitter, and 7.5% were present on LinkedIn. The most popular on Facebook was the International Council of Ophthalmology, and the American Academy of Ophthalmology was most popular on Twitter and LinkedIn. Patient advocacy organizations were more popular on all sites compared with journals, professional association, and trade publications. Among the top ten most popular pages in each category, patient advocacy groups were most active followed by trade publications, professional associations, and journals. Patient advocacy groups lead the way in social networking followed by professional organizations and journals. Although some journals use social media, most have yet to engage its full potential and maximize the number of potential interested individuals.

Bridging dermatologists with patient advocacy organizations through smartphones.

PubMed

Kourosh, A Shadi; Schoenberg, Evan D; Dejace, Jean M; Bergstresser, Paul R

2014-03-01

Patient advocacy organizations seek to increase their benefits for patients with skin disease; low awareness and patient referrals among dermatologists have presented an obstacle to this. To determine whether the Skin Advocate iPhone App would increase awareness and referrals to patient advocacy organizations in the Coalition of Skin Diseases (CSD) among Texas dermatologists and dermatology residents and patient registrations among CSD member organizations. We present results of an institutional review board-exempted investigation conducted among member organizations of the CSD and among dermatologists and dermatology residents in Texas from April 1, 2011, through March 31, 2013. Effects were measured in a blinded fashion subjectively through pre-intervention and post-intervention surveys and objectively through internal analytics that tracked downloads and use of the iPhone app, as well as pre-intervention and post-intervention numbers of registrations for CSD member organizations. The Skin Advocate iPhone App. Awareness and referrals to patient advocacy organizations in the CSD among Texas dermatologists and dermatology residents and patient registrations among CSD member organizations. Throughout the study, mean app use ranged from 3.3 to 3.6 uses per user per month, maintaining the 3-fold improvement compared with self-reported referral for 90% of the study population and a 12-fold improvement for 64% of the study population. Our data revealed substantial improvement in self-reported physician awareness and referrals, and increased patient registrations for CSD organizations. The Skin Advocate iPhone App improved physician awareness and subsequent referrals to CSD member organizations.

Visiting hours policies in New England intensive care units: strategies for improvement.

PubMed

Lee, Melissa D; Friedenberg, Allison S; Mukpo, David H; Conray, Kayla; Palmisciano, Amy; Levy, Mitchell M

2007-02-01

Dying patients often feel isolated and alone, and restricted visiting hours in the intensive care unit (ICU) has been shown to increase anxiety and dissatisfaction in both critically ill patients and their families. Unrestricted visiting has been identified as a top-ten need by families of patients in the ICU. Because emotional distress experienced by patients and families may persist well beyond the ICU stay, an open visiting policy, by meeting the needs of patients and families, may improve the quality of end-of-life care in the ICU. This two-part study included a survey to determine the visiting hours policies of New England-area hospital ICUs, and nursing focus groups to describe challenges and barriers that nursing staff working in an open ICU have experienced and to provide solutions that will facilitate implementation of an open visiting hours policy. Two-part study: survey and focus groups. ICUs in New England and one medical ICU in a tertiary care hospital. Registered nurses employed in medical ICUs. Adult ICUs in the six New England states were located using a library listing of all regional hospitals. A telephone questionnaire interview was used to ascertain visiting hours policies in each ICU. Six focus-group sessions were conducted with nursing staff who work in an urban, northeastern ICU with 8 yrs of experience with an unrestricted visiting hours policy. A total of 171 hospitals completed the questionnaire (96%). From all ICUs surveyed, 62 (32%) had unrestricted, open visiting hours. Out of these, 57 (92%) were medical ICUs or mixed medical/surgical ICUs. Nursing staff identified three major areas of concern with an open visiting hours policy: space, conflict, and burden. Strategies for resolution that are either employed or advocated by nursing staff are described. The majority of ICUs in New England have restricted visiting hours. Only one third of ICUs have open visiting policies. Nursing concerns with an unrestricted ICU were identified and solutions were offered that may provide guidance for other ICUs considering adopting an open visiting hours policy.

Protective Nursing Advocacy: Translation and Psychometric Evaluation of an Instrument and a Descriptive Study of Swedish Registered Nurse Anesthetists' Beliefs and Actions.

PubMed

Sundqvist, Ann-Sofie; Anderzén-Carlsson, Agneta; Nilsson, Ulrica; Holmefur, Marie

2018-02-01

To translate and adapt the Protective Nursing Advocacy Scale (PNAS) into a Swedish version (PNAS-Swe), evaluate its psychometric properties, and describe registered nurse anesthetists' (RNAs) advocacy beliefs and actions from a protective perspective. A cross-sectional design was used. First, the PNAS was translated into Swedish. Next, the content and construct validity of the PNAS four subscales was evaluated. Finally, the PNAS-Swe was used to describe Swedish RNA beliefs and actions regarding protective nursing advocacy. The final PNAS-Swe has 29 items in four subscales. The RNAs reported that they feel that they should provide protective nursing advocacy for their patients. There were no differences in gender, or associations with age, or work experience regarding their advocacy beliefs or actions. The PNAS-Swe is valid for use in a Swedish context. Protective nursing advocacy is important to the RNAs, which is in congruence with earlier qualitative studies. Copyright © 2016 American Society of PeriAnesthesia Nurses. Published by Elsevier Inc. All rights reserved.

Medical Advocacy and Supportive Environments for African-Americans Following Abnormal Mammograms.

PubMed

Molina, Yamile; Hempstead, Bridgette H; Thompson-Dodd, Jacci; Weatherby, Shauna Rae; Dunbar, Claire; Hohl, Sarah D; Malen, Rachel C; Ceballos, Rachel M

2015-09-01

African-American women experience disproportionately adverse outcomes relative to non-Latina White women after an abnormal mammogram result. Research has suggested medical advocacy and staff support may improve outcomes among this population. The purpose of the study was to understand reasons African-American women believe medical advocacy to be important and examine if and how staff can encourage and be supportive of medical advocacy. A convenience-based sample of 30-74-year-old women who self-identified as African-American/Black/of African descent and who had received an abnormal mammogram result was recruited from community-based organizations, mobile mammography services, and the local department of health. This qualitative study included semi-structured interviews. Patients perceived medical advocacy to be particularly important for African-Americans, given mistrust and discrimination present in medical settings and their own familiarity with their bodies and symptoms. Respondents emphasized that staff can encourage medical advocacy through offering information in general in a clear, informative, and empathic style. Cultural competency interventions that train staff how to foster medical advocacy may be a strategy to improve racial disparities following an abnormal mammogram.

Ophthalmology on social networking sites: an observational study of Facebook, Twitter, and LinkedIn

PubMed Central

Micieli, Jonathan A; Tsui, Edmund

2015-01-01

Background The use of social media in ophthalmology remains largely unknown. Our aim was to evaluate the extent and involvement of ophthalmology journals, professional associations, trade publications, and patient advocacy and fundraising groups on social networking sites. Methods An archived list of 107 ophthalmology journals from SCImago, trade publications, professional ophthalmology associations, and patient advocacy organizations were searched for their presence on Facebook, Twitter, and LinkedIn. Activity and popularity of each account was quantified by using the number of “likes” on Facebook, the number of followers on Twitter, and members on LinkedIn. Results Of the 107 journals ranked by SCImago, 21.5% were present on Facebook and 18.7% were present on Twitter. Journal of Community Eye Health was the most popular on Facebook and JAMA Ophthalmology was most popular on Twitter. Among the 133 members of the International Council of Ophthalmology, 17.3% were present on Facebook, 12.8% were present on Twitter, and 7.5% were present on LinkedIn. The most popular on Facebook was the International Council of Ophthalmology, and the American Academy of Ophthalmology was most popular on Twitter and LinkedIn. Patient advocacy organizations were more popular on all sites compared with journals, professional association, and trade publications. Among the top ten most popular pages in each category, patient advocacy groups were most active followed by trade publications, professional associations, and journals. Conclusion Patient advocacy groups lead the way in social networking followed by professional organizations and journals. Although some journals use social media, most have yet to engage its full potential and maximize the number of potential interested individuals. PMID:25709390

Physician specialty and the quality of medical care experiences in the context of the Taiwan national health insurance system.

PubMed

Tsai, Jenna; Shi, Leiyu; Yu, Wei-Lung; Hung, Li-Mei; Lebrun, Lydie A

2010-01-01

Based on a recent patient survey from Taiwan, where there is universal health insurance coverage and unrestricted physician choice, this study examined the relationship between physician specialty and the quality of primary medical care experiences. We assessed ambulatory patients' experiences with medical care using the Primary Care Assessment Tool, representing 7 primary care domains: first contact (ie, accessibility and utilization); longitudinality (ie, ongoing care); coordination (ie, referrals and information systems); comprehensiveness (ie, services available and provided); family centeredness; community orientation; and cultural competence. Having a primary care physician was significantly associated with patients reporting higher quality of primary care experiences. Specifically, relative to specialty care physicians, primary care physicians enhanced accessibility, achieved better community orientation and cultural competence, and provided more comprehensive services. In an area with universal health insurance and unrestricted physician choice, ambulatory patients of primary care physicians rated their medical care experiences as superior to those of patients of specialists. In addition to providing health insurance coverage, promoting primary care should be included as a health policy to improve patients' quality of ambulatory medical care experiences.

13 CFR 121.409 - What size standard applies in an unrestricted procurement for Certificate of Competency purposes?

Code of Federal Regulations, 2010 CFR

2010-01-01

... unrestricted procurement for Certificate of Competency purposes? 121.409 Section 121.409 Business Credit and... an unrestricted procurement for Certificate of Competency purposes? For the purpose of receiving a Certificate of Competency in an unrestricted procurement, the applicable size standard is that corresponding...

Breast cancer advocacy internships: student motivations, intentions, and perceptions.

PubMed

Trump, Tasha; Henderson, Jessica

2011-03-01

Currently, there are no published studies about the impact on students of a structured, breast-cancer-specific advocacy internship. Our goal was to provide the student perspective of participation in a national breast cancer advocacy conference in Washington, D.C. as part of an internship. Both qualitative and quantitative data were collected in three waves: 1 month before the training, during the training, and 1 month post-training. Four themes emerged: (1) empowerment, (2) connection with breast cancer patients and advocates, (3) learning outside the classroom, and (4) action through advocacy and civilian lobbying. This study found strong support for the internship model described here and is recommended for replication at other universities and institutions.

Continuous recording of pulmonary artery pressure in unrestricted subjects.

PubMed Central

Ikram, H; Richards, A M; Hamilton, E J; Nicholls, M G

1984-01-01

Continuous ambulatory pulmonary artery pressures were recorded using a conventional No 5 French Goodale-Lubin filled catheter linked to the Oxford Medilog system of a portable transducer-perfusion unit and miniaturised recorder. Data retrieval and analysis were performed using a PB2 Medilog playback unit linked to a PDP 11 computer system. The total system has a frequency response linear to 8 Hz allowing accurate pressure recording over the full range of heart rates. Ten recordings in 10 patients yielded artefact free data for 80% or more of the recorded period. This inexpensive reliable method allows pulmonary artery pressures to be recorded in unrestricted subjects. Images PMID:6704262

Advocating to Protect Our Nurses: Addressing Unethical Recruitment of Foreign-Educated Nurses.

PubMed

Shaffer, Franklin; Bakhshi, Mukul; Jacobs, Arielle

Advocacy in the nursing sector is often about advocating for patients. However, nurses have begun to put more effort into protecting their rights as workers. Advocacy on behalf of foreign-educated nurses has been a critical component of this advocacy. While foreign-educated nurses can make our nursing workforce stronger, this can only happen if they are well-treated and well-trained. Organizations across diverse missions and perspectives have come together to promote fair treatment of foreign-educated nurses, which ultimately ensures that all nurses are working as effectively as possible and that patients receive proper care. The Alliance for Ethical International Recruitment Practices' Health Care Code for Ethical Recruitment and Employment Practices represents a bottom-up agreement on which market practices constitute ethical recruitment. From a top-down level, the World Health Organization's Code of Global Practice establishes obligations and reporting requirements for member states that commit to ensuring ethical recruitment. This combination of efforts, bolstered by strong advocacy, is gaining traction as nursing migration grows at the global level. The collaboration across diverse stakeholder groups and the combination of legal, voluntary, and global efforts to promote the rights of foreign-educated nurses provides a model to apply for advocacy in different areas.

Four strategic pathways for the realization of the right to health through civil society actions: challenges and practical lessons learned in the Egyptian context.

PubMed

Sabae, Ayman

2014-12-11

This article examines four distinctly different, yet fully complementary, strategic pathways adopted by the Egyptian Initiative for Personal Rights (EIPR), an Egyptian independent human rights organization, in its practical efforts to protect and guarantee the realization of the right to health to all Egyptians. It reflects upon practical experiences, covering strategic options that include proposing new legislation to policy makers, participatory formulation of new laws from the ground up, public advocacy, coalition building, and litigation. It also examines several factors that affect the decision on which strategic pathway to follow. It reflects on the politico-economic settings, the presence of political will, the scope and extent of impacted stakeholders and the degree of complexity of the cause in question. Copyright © 2014 Sabae. This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original author and source are credited.

The story of FiZZ: an advocacy group to end the sale of sugar sweetened beverages in New Zealand.

PubMed

Thornley, S; Sundborn, G

2014-03-01

FIZZ (which stands for fighting sugar in soft-drinks) is a new advocacy group started to reduce population consumption of sugar-sweetened soft drinks in New Zealand. The vision of FIZZ is for New Zealand to be sugary drink free by 2025. This means that sugar sweetened beverages will comprise < or = 5% of the total beverage market, and sugar free drinks will be the norm. In this paper, we outline the story of FIZZ: to reiterate why we believe the group is needed, reflect on what the group has achieved to date, consider what it aims to accomplish, and outline what methods it will seek to achieve these aims. Put simply, we believe that the epidemiological evidence that sugar intake, particularly in liquid form, causes poor physical and mental health is overwhelming. Swapping sugar sweetened drinks for sugar free alternatives, water or milk, is, in our view, an urgently needed and important step which is likely to reduce the epidemic of unhealthy weight (obesity) and its sequelae. The nutrition environment in New Zealand is now out of step with scientific evidence, with virtually unrestricted access to, and sales and marketing of, sugary drinks to both children and adults. FIZZ is seeking the implementation of local and nationwide policy, similar to those implemented for tobacco, to limit advertising, restrict marketing, raise purchase prices and ultimately curb the sales of sugary drinks in New Zealand. FIZZ is also working in communities to raise people's awareness of the harms sugary drinks pose to health. We at FIZZ also acknowledge that the beverage industry may play an important role in accomplishing this vision, and have established that there is common ground upon which FIZZ and industry can engage to reduce the sugary drink intake.

Human rights in patient care: a theoretical and practical framework.

PubMed

Cohen, Jonathan; Ezer, Tamar

2013-12-12

The concept of "human rights in patient care" refers to the application of human rights principles to the context of patient care. It provides a principled alternative to the growing discourse of "patients' rights" that has evolved in response to widespread and severe human rights violations in health settings. Unlike "patients' rights," which is rooted in a consumer framework, this concept derives from inherent human dignity and neutrally applies universal, legally recognized human rights principles, protecting both patients and providers and admitting of limitations that can be justified by human rights norms. It recognizes the interrelation between patient and provider rights, particularly in contexts where providers face simultaneous obligations to patients and the state ("dual loyalty") and may be pressured to abet human rights violations. The human rights lens provides a means to examine systemic issues and state responsibility. Human rights principles that apply to patient care include both the right to the highest attainable standard of health, which covers both positive and negative guarantees in respect of health, as well as civil and political rights ranging from the patient's right to be free from torture and inhumane treatment to liberty and security of person. They also focus attention on the right of socially excluded groups to be free from discrimination in the delivery of health care. Critical rights relevant to providers include freedom of association and the enjoyment of decent work conditions. Some, but not all, of these human rights correspond to rights that have been articulated in "patients' rights" charters. Complementary to—but distinct from—bioethics, human rights in patient care carry legal force and can be applied through judicial action. They also provide a powerful language to articulate and mobilize around justice concerns, and to engage in advocacy through the media and political negotiation. As "patients' rights" movements and charters grow in popularity, it is important to link patient rights back to human rights standards and processes that are grounded in international law and consensus. Copyright © 2013 Cohen and Ezer. This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original author and source are credited.

Impact of Communication Competency Training on Nursing Students' Self-advocacy Skills.

PubMed

Doherty, Christi; Landry, Heidi; Pate, Barbara; Reid, Helen

2016-01-01

Deficiencies in nursing students' communication skills need to be addressed for students to influence and skillfully collaborate in crucial patient and self-advocacy conversations. This study evaluated the effectiveness of a communication competency educational program for nursing students (N = 61). A paired-sample t test determined that there was a statistical significance from pre to post intervention, indicating the importance of communication competency education for nursing students' ability to advocate for themselves and their patients.

A review of the alpha-1 foundation: its formation, impact, and critical success factors.

PubMed

Walsh, John W; Snider, Gordon L; Stoller, James K

2006-05-01

Patient-advocacy organizations have proliferated because they can be an effective method to advance research and clinical care for those with the index condition, and can produce substantial benefits for the affected community, especially when the condition is uncommon. To clarify critical success factors in organizing a patient-advocacy organization and to provide a blueprint for others, including the respiratory-care advocacy community, this report examines features of one highly successful organization, the Alpha-1 Foundation, which is committed to helping those with the genetic condition alpha-1 antitrypsin deficiency. Features of the Alpha-1 Foundation that underlie its success include: consistently creating partnerships with key stakeholders, including the scientific and clinical communities, government, and pharmaceutical manufacturers; bringing passion to the cause (eg, by assuring that organizational leadership is provided by individuals affected by alpha-1 antitrypsin deficiency); and developing strategic business partnerships, as with a company that administers alpha-1 antitrypsin treatment (so-called intravenous augmentation therapy) and employs individuals with alpha-1 antitrypsin deficiency. Funds allocated by the company help to underwrite the foundation's research-funding commitment. The foundation also recruits and retains talent, including alpha-1 patients, to leadership roles (eg, on the board of directors) and has a voluntary group of committed scientists and clinicians. We believe that attention to these factors can help assure the success of patient-advocacy groups.

How disease advocacy organizations participate in clinical research: a survey of genetic organizations.

PubMed

Landy, David C; Brinich, Margaret A; Colten, Mary Ellen; Horn, Elizabeth J; Terry, Sharon F; Sharp, Richard R

2012-02-01

Disease advocacy organizations may assist in the conduct of research in a variety of ways. We sought to characterize how disease advocacy organizations participate in clinical research and perceive their contributions. Postal and electronic surveys administered to leaders of disease advocacy organizations for genetic conditions identified through the Genetic Alliance's Disease InfoSearch. Of the 201 disease advocacy organizations approached, 124 (62%) responded. In the past 2 years, 91% of these organizations had assisted in participant recruitment, 75% collected data, 60% provided a researcher with financial support, and 56% assisted with study design. Forty-five percent of these organizations also supported a research registry or biobank. Few disease advocacy organization leaders (12%) reported regrets about research studies they had supported. Most (68%) felt their involvement in clinical research had increased the amount of research on their condition and that researchers should consult organizations like theirs in deciding how to recruit participants (58%) and in selecting research topics (56%). In addition to providing financial support, disease advocacy organizations participate directly in multiple aspects of research, ranging from study design and patient recruitment to data collection and analysis. Leaders of these organizations feel strongly that scientists and research sponsors should engage them as partners in the conduct of clinical research.

An Analysis of Costs and Cenefits Associated with Initial Contracting Technical Education and Training for Unrestricted Marine Officers

DTIC Science & Technology

2017-03-01

COSTS AND BENEFITS ASSOCIATED WITH INITIAL CONTRACTING TECHNICAL EDUCATION AND TRAINING FOR UNRESTRICTED MARINE OFFICERS by Lee A. White...WITH INITIAL CONTRACTING TECHNICAL EDUCATION AND TRAINING FOR UNRESTRICTED MARINE OFFICERS 5. FUNDING NUMBERS 6. AUTHOR(S) Lee A. White 7. PERFORMING...unlimited. AN ANALYSIS OF COSTS AND BENEFITS ASSOCIATED WITH INITIAL CONTRACTING TECHNICAL EDUCATION AND TRAINING FOR UNRESTRICTED MARINE OFFICERS

Patient attitudes and understanding about biosimilars: an international cross-sectional survey

PubMed Central

Jacobs, Ira; Singh, Ena; Sewell, K Lea; AL-Sabbagh, Ahmad; Shane, Lesley G

2016-01-01

Objective To understand the levels of awareness, usage, and knowledge of biosimilars among patients, caregivers, and the general population in the US and the European Union; perceptions of biosimilars compared to originator biologics; perceived benefits and drawbacks of clinical trials; and whether advocacy groups impact patients’ willingness to try a biosimilar. Methods An international survey was conducted which contained up to 56 closed-ended (requiring yes/no or ranking answers) and open-ended questions, depending on the population assigned. The survey was divided into distinct sections, including medication-class awareness, usage, and knowledge about biologic and biosimilar therapies; perceptions of clinical trials; and involvement in advocacy groups. Interviews were conducted in adults categorized as: 1) diagnosed: patients with inflammatory bowel disease including Crohn’s disease and ulcerative colitis, rheumatoid arthritis, psoriasis, breast cancer, lung cancer, colorectal cancer, or non-Hodgkin’s lymphoma; 2) diagnosed advocacy: individuals with these diseases who participated in patient support groups; 3) caregiver: has a loved one with these conditions and is involved in medical decisions; 4) general population: aged 18–64 years, without these conditions. Statistical analyses among groups within a region (US or EU) used column proportions test with a 95% confidence interval. Results In all, 3,198 individuals responded. Awareness about biologic therapies was significantly higher in diagnosed, diagnosed advocacy, and caregiver groups (45%–78%) versus general population (27%; P<0.05). Across all groups, awareness of biosimilars was low; only 6% of the general population reported at least a general impression of biosimilars. Awareness was significantly higher in the diagnosed advocacy group (20%–30%; P<0.05). Gaps in knowledge about biosimilars included safety, efficacy, and access to these agents. Respondents had generally positive perceptions of clinical trials, although barriers to participation were identified. Conclusion An immediate need exists for patient education about biosimilars and clinical trials to ensure educated and informed decisions are made about biosimilar use. PMID:27307714

SU-F-J-06: Optimized Patient Inclusion for NaF PET Response-Based Biopsies

DOE Office of Scientific and Technical Information (OSTI.GOV)

Roth, A; Harmon, S; Perk, T

Purpose: A method to guide mid-treatment biopsies using quantitative [F-18]NaF PET/CT response is being investigated in a clinical trial. This study aims to develop methodology to identify patients amenable to mid-treatment biopsy based on pre-treatment imaging characteristics. Methods: 35 metastatic prostate cancer patients had NaF PET/CT scans taken prior to the start of treatment and 9–12 weeks into treatment. For mid-treatment biopsy targeting, lesions must be at least 1.5 cm{sup 3} and located in a clinically feasible region (lumbar/sacral spine, pelvis, humerus, or femur). Three methods were developed based on number of lesions present prior to treatment: a feasibility-restricted method,more » a location-restricted method, and an unrestricted method. The feasibility restricted method only utilizes information from lesions meeting biopsy requirements in the pre-treatment scan. The unrestricted method accounts for all lesions present in the pre-treatment scan. For each method, optimized classification cutoffs for candidate patients were determined. Results: 13 of the 35 patients had enough lesions at the mid-treatment for biopsy candidacy. Of 1749 lesions identified in all 35 patients at mid-treatment, only 9.8% were amenable to biopsy. Optimizing the feasibility-restricted method required 4 lesions at pre-treatment meeting volume and region requirements for biopsy, resulting patient identification sensitivity of 0.8 and specificity of 0.7. Of 6 false positive patients, only one patient lacked lesions for biopsy. Restricting for location alone showed poor results (sensitivity 0.2 and specificity 0.3). The optimized unrestricted method required patients have at least 37 lesions in pretreatment scan, resulting in a sensitivity of 0.8 and specificity of 0.8. There were 5 false positives, only one lacked lesions for biopsy. Conclusion: Incorporating the overall pre-treatment number of NaF PET/CT identified lesions provided best prediction for identifying candidate patients for mid-treatment biopsy. This study provides validity for prediction-based inclusion criteria that can be extended to various clinical trial scenarios. Funded by Prostate Cancer Foundation.« less

Declining Hepatitis C Virus (HCV) Incidence in Dutch Human Immunodeficiency Virus-Positive Men Who Have Sex With Men After Unrestricted Access to HCV Therapy.

PubMed

Boerekamps, Anne; van den Berk, Guido E; Lauw, Fanny N; Leyten, Eliane M; van Kasteren, Marjo E; van Eeden, Arne; Posthouwer, Dirk; Claassen, Mark A; Dofferhoff, Anton S; Verhagen, Dominique W M; Bierman, Wouter F; Lettinga, Kamilla D; Kroon, Frank P; Delsing, Corine E; Groeneveld, Paul H; Soetekouw, Robert; Peters, Edgar J; Hullegie, Sebastiaan J; Popping, Stephanie; van de Vijver, David A M C; Boucher, Charles A; Arends, Joop E; Rijnders, Bart J

2018-04-17

Direct-acting antivirals (DAAa) cure hepatitis C virus (HCV) infections in 95% of infected patients. Modeling studies predict that universal HCV treatment will lead to a decrease in the incidence of new infections but real-life data are lacking. The incidence of HCV among Dutch human immunodeficiency virus (HIV)-positive men who have sex with men (MSM) has been high for >10 years. In 2015 DAAs became available to all Dutch HCV patients and resulted in a rapid treatment uptake in HIV-positive MSM. We assessed whether this uptake was followed by a decrease in the incidence of HCV infections. Two prospective studies of treatment for acute HCV infection enrolled patients in 17 Dutch HIV centers, having 76% of the total HIV-positive MSM population in care in the Netherlands. Patients were recruited in 2014 and 2016, the years before and after unrestricted DAA availability. We compared the HCV incidence in both years. The incidence of acute HCV infection decreased from 93 infections during 8290 person-years of follow-up (PYFU) in 2014 (11.2/1000 PYFU; 95% confidence interval [CI], 9.1-13.7) to 49 during 8961 PYFU in 2016 (5.5/1000 PYFU; 4.1-7.2). The incidence rate ratio of 2016 compared with 2014 was 0.49 (95% CI, .35-.69). Simultaneously, a significant increase in the percentage positive syphilis (+2.2%) and gonorrhea (+2.8%) tests in HIV-positive MSM was observed at sexual health clinics across the Netherlands and contradicts a decrease in risk behavior as an alternative explanation. Unrestricted DAA availability in the Netherlands was followed by a 51% decrease in acute HCV infections among HIV-positive MSM.

Human rights education in patient care.

PubMed

Erdman, Joanna N

2017-01-01

This article explores how human rights education in the health professions can build knowledge, change culture, and empower advocacy. Through a study of educational initiatives in the field, the article analyzes different methods by which health professionals come to see the relevance of human rights norms for their work, to habituate these norms in everyday practice, and to espouse these norms in advocacy for social justice. The article seeks to show the transformative potential of education for human rights in patient care.

Permeability-diffusivity modeling vs. fractional anisotropy on white matter integrity assessment and application in schizophrenia.

PubMed

Kochunov, P; Chiappelli, J; Hong, L E

2013-01-01

Diffusion tensor imaging (DTI) assumes a single pool of anisotropically diffusing water to calculate fractional anisotropy (FA) and is commonly used to ascertain white matter (WM) deficits in schizophrenia. At higher b-values, diffusion-signal decay becomes bi-exponential, suggesting the presence of two, unrestricted and restricted, water pools. Theoretical work suggests that semi-permeable cellular membrane rather than the presence of two physical compartments is the cause. The permeability-diffusivity (PD) parameters measured from bi-exponential modeling may offer advantages, over traditional DTI-FA, in identifying WM deficits in schizophrenia. Imaging was performed in N = 26/26 patients/controls (age = 20-61 years, average age = 40.5 ± 12.6). Imaging consisted of fifteen b-shells: b = 250-3800 s/mm(2) with 30 directions/shell, covering seven slices of mid-sagittal corpus callosum (CC) at 1.7 × 1.7 × 4.6 mm. 64-direction DTI was also collected. Permeability-diffusivity-index (PDI), the ratio of restricted to unrestricted apparent diffusion coefficients, and the fraction of unrestricted compartment (Mu) were calculated for CC and cingulate gray matter (GM). FA values for CC were calculated using tract-based-spatial-statistics. Patients had significantly reduced PDI in CC (p ≅ 10(- 4)) and cingulate GM (p = 0.002), while differences in CC FA were modest (p ≅ .03). There was no group-related difference in Mu. Additional theoretical-modeling analysis suggested that reduced PDI in patients may be caused by reduced cross-membrane water molecule exchanges. PDI measurements for cerebral WM and GM yielded more robust patient-control differences than DTI-FA. Theoretical work offers an explanation that patient-control PDI differences should implicate abnormal active membrane permeability. This would implicate abnormal activities in ion-channels that use water as substrate for ion exchange, in cerebral tissues of schizophrenia patients.

The future of continuing medical education: the roles of medical professional societies and the health care industry: Position paper prepared with contributions from the European Society of Cardiology Committees for Advocacy, Education and Industry Relations, Endorsed by the Board of the European Society of Cardiology.

PubMed

2018-02-28

In recent years, wide ranging biomedical innovation has provided powerful new approaches for prevention, diagnosis and management of diseases. In order to translate such innovation into effective practice, physicians must frequently update their knowledge base and skills through continuing medical education and training. Medical Professional Societies, run as not-for-profit organizations led by peers, are uniquely placed to deliver balanced, disease oriented and patient centred education. The medical industry has a major role in the development of new, improved technology, devices and medication. In fact, the best innovations have been achieved through collaboration with scientists, clinical academics and practicing physicians. Industry has for many years been committed to ensure the optimal and safe application of its products by providing unrestricted support of medical education developed and delivered by international and national learned societies. Recently adopted Codes of Practice for the Pharmaceutical and Device industry were intended to enhance public trust in the relationship between biomedical industry and physicians. Unexpectedly, changes resulting from adoption of the Codes have limited the opportunity for unconditional industry support of balanced medical education in favour of a more direct involvement of industry in informing physicians about their products. We describe the need for continuing medical education in Cardiovascular Medicine in Europe, interaction between the medical profession and medical industry, and propose measures to safeguard the provision of high quality, balanced medical education.

15 CFR 740.13 - Technology and software-unrestricted (TSU).

Code of Federal Regulations, 2011 CFR

2011-01-01

... 15 Commerce and Foreign Trade 2 2011-01-01 2011-01-01 false Technology and software-unrestricted... REGULATIONS LICENSE EXCEPTIONS § 740.13 Technology and software—unrestricted (TSU). This license exception authorizes exports and reexports of operation technology and software; sales technology and software...

15 CFR 740.13 - Technology and software-unrestricted (TSU).

Code of Federal Regulations, 2013 CFR

2013-01-01

... 15 Commerce and Foreign Trade 2 2013-01-01 2013-01-01 false Technology and software-unrestricted... REGULATIONS LICENSE EXCEPTIONS § 740.13 Technology and software—unrestricted (TSU). This license exception authorizes exports and reexports of operation technology and software; sales technology and software...

15 CFR 740.13 - Technology and software-unrestricted (TSU).

Code of Federal Regulations, 2014 CFR

2014-01-01

... 15 Commerce and Foreign Trade 2 2014-01-01 2014-01-01 false Technology and software-unrestricted... REGULATIONS LICENSE EXCEPTIONS § 740.13 Technology and software—unrestricted (TSU). This license exception authorizes exports and reexports of operation technology and software; sales technology and software...

15 CFR 740.13 - Technology and software-unrestricted (TSU).

Code of Federal Regulations, 2012 CFR

2012-01-01

... 15 Commerce and Foreign Trade 2 2012-01-01 2012-01-01 false Technology and software-unrestricted... REGULATIONS LICENSE EXCEPTIONS § 740.13 Technology and software—unrestricted (TSU). This license exception authorizes exports and reexports of operation technology and software; sales technology and software...

15 CFR 740.13 - Technology and software-unrestricted (TSU).

Code of Federal Regulations, 2010 CFR

2010-01-01

... 15 Commerce and Foreign Trade 2 2010-01-01 2010-01-01 false Technology and software-unrestricted... REGULATIONS LICENSE EXCEPTIONS § 740.13 Technology and software—unrestricted (TSU). This license exception authorizes exports and reexports of operation technology and software; sales technology and software...

1 CFR 2.6 - Unrestricted use.

Code of Federal Regulations, 2010 CFR

2010-01-01

... 1 General Provisions 1 2010-01-01 2010-01-01 false Unrestricted use. 2.6 Section 2.6 General Provisions ADMINISTRATIVE COMMITTEE OF THE FEDERAL REGISTER GENERAL GENERAL INFORMATION § 2.6 Unrestricted use. Any person may reproduce or republish, without restriction, any material appearing in any regular...

1 CFR 2.6 - Unrestricted use.

Code of Federal Regulations, 2011 CFR

2011-01-01

... 1 General Provisions 1 2011-01-01 2011-01-01 false Unrestricted use. 2.6 Section 2.6 General Provisions ADMINISTRATIVE COMMITTEE OF THE FEDERAL REGISTER GENERAL GENERAL INFORMATION § 2.6 Unrestricted use. Any person may reproduce or republish, without restriction, any material appearing in any regular...

1 CFR 2.6 - Unrestricted use.

Code of Federal Regulations, 2012 CFR

2012-01-01

... 1 General Provisions 1 2012-01-01 2012-01-01 false Unrestricted use. 2.6 Section 2.6 General Provisions ADMINISTRATIVE COMMITTEE OF THE FEDERAL REGISTER GENERAL GENERAL INFORMATION § 2.6 Unrestricted use. Any person may reproduce or republish, without restriction, any material appearing in any regular...

1 CFR 2.6 - Unrestricted use.

Code of Federal Regulations, 2013 CFR

2013-01-01

... 1 General Provisions 1 2013-01-01 2012-01-01 true Unrestricted use. 2.6 Section 2.6 General Provisions ADMINISTRATIVE COMMITTEE OF THE FEDERAL REGISTER GENERAL GENERAL INFORMATION § 2.6 Unrestricted use. Any person may reproduce or republish, without restriction, any material appearing in any regular...

1 CFR 2.6 - Unrestricted use.

Code of Federal Regulations, 2014 CFR

2014-01-01

... 1 General Provisions 1 2014-01-01 2012-01-01 true Unrestricted use. 2.6 Section 2.6 General Provisions ADMINISTRATIVE COMMITTEE OF THE FEDERAL REGISTER GENERAL GENERAL INFORMATION § 2.6 Unrestricted use. Any person may reproduce or republish, without restriction, any material appearing in any regular...

Medical societies, patient education initiatives, public debate and marketing of unproven stem cell interventions.

PubMed

Weiss, Daniel J; Turner, Leigh; Levine, Aaron D; Ikonomou, Laertis

2018-02-01

Businesses marketing unproven stem cell interventions proliferate within the U.S. and in the larger global marketplace. There have been global efforts by scientists, patient advocacy groups, bioethicists, and public policy experts to counteract the uncontrolled and premature commercialization of stem cell interventions. In this commentary, we posit that medical societies and associations of health care professionals have a particular responsibility to be an active partner in such efforts. We review the role medical societies can and should play in this area through patient advocacy and awareness initiatives. Copyright © 2017 International Society for Cellular Therapy. Published by Elsevier Inc. All rights reserved.

Nursing advocacy during a military operation.

PubMed

Foley, B J; Minick, P; Kee, C

2000-06-01

Advocacy is an essential component of the registered nurse's professional role, yet experts provide no consistent definition of advocacy. The purpose of this study was to explore the experiences of military nurses as they engage in advocating practices and to describe their shared practices and common meanings. Heideggerian hermeneutic phenomenology, provided the framework and method for this study. Twenty-four U.S. Army nurses were individually interviewed and the researcher kept interview observational notes. The constant comparative method of analysis was used. The stories of these nurses revealed one constitutive pattern--safeguarding--and four related themes. The themes were advocating as protecting, advocating as attending the whole person, advocating as being the patient's voice, and advocating as preserving personhood. One conclusion was that military nurses must be prepared for the important safe-guarding role. They must be coached in how to deal with other members of the health team on the patient's behalf.

5 CFR 532.801 - Payment of unrestricted rates for recruitment or retention purposes.

Code of Federal Regulations, 2010 CFR

2010-01-01

... recruitment or retention purposes. 532.801 Section 532.801 Administrative Personnel OFFICE OF PERSONNEL MANAGEMENT CIVIL SERVICE REGULATIONS PREVAILING RATE SYSTEMS Payment of Unrestricted Rates for Recruitment or Retention Purposes § 532.801 Payment of unrestricted rates for recruitment or retention purposes. (a) When...

Unrestricted access to methamphetamine or cocaine in the past is associated with increased current use

PubMed Central

Culbertson, C.; De La Garza, R.; Costello, M.; Newton, T. F.

2009-01-01

Laboratory animals allowed to self-administer stimulants for extended periods of time escalate drug intake compared to animals that self-administer under temporally limited conditions. To our knowledge, this phenomenon has not been systematically investigated in humans. We interviewed 106 (77 male, 29 female) methamphetamine (Meth) and 96 (81 male, 15 female) cocaine (Coc) users to determine if they had experienced discrete period(s) of unrestricted access to unlimited quantities of Meth or Coc in the past. Fifty-eight Meth users and 53 Coc users reported having a discrete period of unrestricted access in the past, but not in the present. Meth-using participants with a prior history of unrestricted access reported significantly more current Meth use, compared to Meth users with no prior history of unrestricted access. Specifically, these participants reported more days used in the past 30 d, more days of use per week, greater use per day and greater total use per week (p<0.05 for each). Coc-using participants with a prior history of unrestricted access also reported significantly more current Coc use, compared to Coc users with no prior history of unrestricted access. This was true across all measures of current use for these participants, including more days used in the past 30 d, more days of use per week, greater use per day, and higher total use per week (p<0.02 for each). Taken together, these results suggest that a history of unrestricted access to stimulants is associated with long-lasting increases in stimulant use. PMID:19220922

Effective Partnering in Conducting Benefit-Risk Patient Preference Studies: Perspectives From a Patient Advocacy Organization, a Pharmaceutical Company, and Academic Stated-Preference Researchers.

PubMed

Wolka, Anne M; Fairchild, Angelyn O; Reed, Shelby D; Anglin, Greg; Johnson, F Reed; Siegel, Michael; Noel, Rebecca

2017-01-01

Formal incorporation of patients' perspectives is becoming increasingly important in medical product development and decision making. This article shares practical advice regarding how patient advocacy organizations, the pharmaceutical industry, and academic experts in stated-preference research can effectively partner on benefit-risk patient preference studies. The authors partnered on a benefit-risk patient preference study related to the treatment of psoriasis. The authors from Duke Clinical Research Institute also share their experiences in collaborating with numerous other organizations in conducting benefit-risk patient preference studies. Upon initiation of the study partnership with appropriate experts, training is important to ensure all collaborators have a common understanding of the methodology, what objectives stated-preference methods can support, and expectations for the project. To the extent possible, partners should align on and document relevant clinical and logistical details prior to study implementation. During study implementation, partners should use good communication practices and document and maintain a record of any changes to the original plan. Presentation of the study results should be tailored to the particular audience, with the appropriate partner leading the presentation based on its format and audience. Partners from patient advocacy organizations, the pharmaceutical industry, and academia can effectively collaborate on benefit-risk patient preference studies with sufficient planning and ongoing communication. This article is a call for action for other organizations to engage in sharing of experiences regarding effective partnering in quantifying patient preferences in medical product development.

Patient Experience Data in US Food and Drug Administration (FDA) Regulatory Decision Making:: A Policy Process Perspective.

PubMed

Kuehn, Carrie M

2018-01-01

The influence of patient advocates on FDA regulatory decision making has increased. Despite enhanced engagement with FDA, there remain challenges to achieving the regulatory goals of patients within FDA's regulatory framework. Gaps exist between patient advocates' knowledge of the agency's processes and FDA's need for rigorous, clinically meaningful patient experience data. This study examined the policy process in which patient experience data are collected by patient advocates and provided to FDA for regulatory decision making. Semistructured, narrative interviews were conducted with 14 professionals working in patient advocacy or at FDA. The purpose was to examine, in depth, participants' perceptions and experiences regarding this new regulatory process. Interviews were coded and examined for themes. The use of patient experience data by FDA is an evolving regulatory process. Participants identified a number of barriers and contributors to regulatory success. Well-organized and sophisticated patient advocacy groups with access to scientific and policy expertise are more likely to find success meeting FDA's patient experience data requirements. A conceptual model of this regulatory process was developed. Use of patient experience data by FDA has the potential to positively influence the regulation of medical products in the United States. Success within this new regulatory process will depend on clear guidance from FDA regarding the collection, analysis, and use of patient experience data. Patient advocacy groups must enhance internal capacity and expertise while engaging in substantive collaborations with FDA and other stakeholders in order to meaningfully contribute to the regulatory review of new therapeutics.

Ovarian Cancer Survivors’ Experiences of Self-Advocacy: A Focus Group Study

PubMed Central

Hagan, Teresa L.; Donovan, Heidi S.

2014-01-01

Purpose/Objectives To explore ovarian cancer survivors’ experiences of self-advocacy in symptom management. Research Approach Descriptive, qualitative. Setting A public café in an urban setting. Participants 13 ovarian cancer survivors aged 26–69 years with a mean age of 51.31. Methodologic Approach Five focus groups were formed. Focus group discussions were audio recorded and transcribed verbatim. The content was analyzed using the constant comparison method with axial coding. In-depth interviews with 5 of the 13 participants occurred via telephone one to five months after each focus group meeting to clarify and expand on identified themes. Preliminary findings were shared with all participants for validation. Findings Two major themes emerged from the data: (a) knowing who I am and keeping my psyche intact, and (b) knowing what I need and fighting for it. Exemplar quotations illustrate the diverse dimensions of self-advocacy. In addition, a working female-centric definition of self-advocacy was attained. Conclusions Women have varying experiences with cancer- and treatment-related symptoms, but share a common process for recognizing and meeting their needs. Self-advocacy was defined as a process of learning one’s needs and priorities as a cancer survivor and negotiating with healthcare teams, social supports, and other survivors to meet these needs. Interpretation This phenomenologic process identified key dimensions and a preliminary definition of self-advocacy that nurses can recognize and support when patients seek and receive care consistent with their own needs and preferences. Knowledge Translation Self-advocacy among female cancer survivors is a process of recognizing one’s needs and priorities and fighting for them within their cancer care and life. Practitioners can support female cancer survivors through the process of self-advocacy by providing them with skills and resources in making informed choices for themselves. PMID:23454476

Ovarian cancer survivors' experiences of self-advocacy: a focus group study.

PubMed

Hagan, Teresa L; Donovan, Heidi S

2013-03-01

To explore ovarian cancer survivors' experiences of self-advocacy in symptom management. Descriptive, qualitative. A public café in an urban setting. 13 ovarian cancer survivors aged 26-69 years with a mean age of 51.31. Five focus groups were formed. Focus group discussions were audio recorded and transcribed verbatim. The content was analyzed using the constant comparison method with axial coding. In-depth interviews with 5 of the 13 participants occurred via telephone one to five months after each focus group meeting to clarify and expand on identified themes. Preliminary findings were shared with all participants for validation. Two major themes emerged from the data: (a) knowing who I am and keeping my psyche intact, and (b) knowing what I need and fighting for it. Exemplar quotations illustrate the diverse dimensions of self-advocacy. In addition, a working female-centric definition of self-advocacy was attained. Women have varying experiences with cancer- and treatment-related symptoms, but share a common process for recognizing and meeting their needs. Self-advocacy was defined as a process of learning one's needs and priorities as a cancer survivor and negotiating with healthcare teams, social supports, and other survivors to meet these needs. This phenomenologic process identified key dimensions and a preliminary definition of self-advocacy that nurses can recognize and support when patients seek and receive care consistent with their own needs and preferences. Self-advocacy among female cancer survivors is a process of recognizing one's needs and priorities and fighting for them within their cancer care and life. Practitioners can support female cancer survivors through the process of self-advocacy by providing them with skills and resources in making informed choices for themselves.

Health Technology Assessment: Global Advocacy and Local Realities Comment on "Priority Setting for Universal Health Coverage: We Need Evidence-Informed Deliberative Processes, Not Just More Evidence on Cost-Effectiveness".

PubMed

Chalkidou, Kalipso; Li, Ryan; Culyer, Anthony J; Glassman, Amanda; Hofman, Karen J; Teerawattananon, Yot

2016-08-29

Cost-effectiveness analysis (CEA) can help countries attain and sustain universal health coverage (UHC), as long as it is context-specific and considered within deliberative processes at the country level. Institutionalising robust deliberative processes requires significant time and resources, however, and countries often begin by demanding evidence (including local CEA evidence as well as evidence about local values), whilst striving to strengthen the governance structures and technical capacities with which to generate, consider and act on such evidence. In low- and middle-income countries (LMICs), such capacities could be developed initially around a small technical unit in the health ministry or health insurer. The role of networks, development partners, and global norm setting organisations is crucial in supporting the necessary capacities. © 2017 The Author(s); Published by Kerman University of Medical Sciences. This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Screening Tests for Birth Defects

MedlinePlus

... Priorities GR & Outreach State Advocacy Underserved Women Global Women's Health Council on Patient Safety For Patients Patient FAQs Spanish Pamphlets Teen Health About ACOG About Us Leadership & Governance ACOG Districts ACOG Sections Careers at ACOG ...

Loyalty and positive word-of-mouth: patients and hospital personnel as advocates of a customer-centric health care organization.

PubMed

Ferguson, Ronald J; Paulin, Michele; Leiriao, Elizabeth

2006-01-01

The ability to attract and retain loyal customers depends on the successful implementation of a customer-centric strategy. Customer loyalty is an attitude about an organization and its' services that is manifested by intentions and behaviors of re-patronization and recommendation. In the context of many medical services, loyalty through repeat patronization is not pertinent, whereas loyalty through positive word-of mouth (WOM) recommendation can be a powerful marketing tool. The Shouldice Hospital, a well-known institution for the surgical correction of hernias, instituted a marketing plan to develop a stable base of patients by creating positive WOM advocacy. This study focused on the consequences of both hernia patient overall satisfaction (and overall service quality) and hospital personnel satisfaction on the level of positive WOM advocacy. Using a commitment ladder of positive WOM advocacy, respondents were divided into three categories described as passive supporters, active advocates and ambassador advocates. Patient assessments of overall satisfaction and service quality were significantly related to these progressive levels of WOM for recommending the hospital to potential patients. Similarly, the satisfaction of the hospital employees was also significantly related to these progressive levels of positive WOM about recommending the hospital to potential patients and to potential employees. High levels of satisfaction are required to create true ambassadors of a service organization.

A curriculum focused on informed empathy improves attitudes toward persons with disabilities.

PubMed

Miller, Sonya R

2013-06-01

Empathy is an important component of the provider-patient relationship. In the United States one in five persons has a disability. Persons with disabilities perceive gaps in health care providers' understanding of their health care preferences and needs. The purpose of this study was to use valid and reliable assessment methods to investigate the association between empathy and attitudes toward persons with disabilities and advocacy. An educational module was developed to enhance health care students' capacity for informed empathy. Pre- and post-assessment measures included the Attitude toward Disabled Persons scale (ATDP), the Attitudes toward Patient Advocacy Microsocial scale (AMIA) and the Interpersonal Reactivity Index (IRI). ATDP (t(94) = -5.95, p = .000) and AMIA (t(92) = -5.99, p = .000) scores increased significantly after the education module. Correlations between the pre- or post-module ATDP or AMIA scores and the IRI scores were not significant. Empathy in general may not be sufficient to ensure optimal attitudes toward persons with disabilities or advocacy in pre-health care professionals. However, a curriculum based on informed empathy and focused on the experiences of persons with disabilities can result in more positive attitudes toward and advocacy for people with disabilities.

Cryoglobulinemia

MedlinePlus

... Book Vasculitis Terms A – Z VF Medical Consultants YouTube Education Videos YouTube Education Videos produced by Alliance for Cryoglobulinemia YouTube Extraordinary Patient Video Stories – Cryoglobulinemia Patient Advocacy Group(s): ...

An entertainment-education colorectal cancer screening decision aid for African American patients: A randomized controlled trial.

PubMed

Hoffman, Aubri S; Lowenstein, Lisa M; Kamath, Geetanjali R; Housten, Ashley J; Leal, Viola B; Linder, Suzanne K; Jibaja-Weiss, Maria L; Raju, Gottumukkala S; Volk, Robert J

2017-04-15

Colorectal cancer screening rates for African American patients remain suboptimal. Patient decision aids designed with an entertainment-education approach have been shown to improve saliency and foster informed decision making. The purpose of this study was to assess whether an entertainment-education decision aid tailored for African American patients improved patients' decision making, attitudes, intentions, or colorectal cancer screening behavior. Eighty-nine participants were randomized to view 1) a patient decision aid video containing culturally tailored information about colorectal cancer screening options and theory-based support in decision making presented in an entertainment-education format or 2) an attention control video about hypertension that contained similarly detailed information. Participants met with their clinician and then completed follow-up questionnaires assessing their knowledge, decisional conflict, self-advocacy, attitudes, perceived social norms, and intentions. At 3 months, completion of screening was assessed by chart review. Viewing the culturally tailored decision aid significantly increased African American patients' knowledge of colorectal cancer screening recommendations and options. It also significantly reduced their decisional conflict and improved their self-advocacy. No significant differences were observed in participants' attitudes, norms, or intentions. At three months, 23% of all patients had completed a colonoscopy. Designing targeted, engaging patient decision aids for groups that receive suboptimal screening holds promise for improving patient decision making and self-advocacy. Additional research is warranted to investigate the effectiveness of such aids in clinical practices with suboptimal screening rates and on downstream behaviors (such as repeat testing). Cancer 2017;123:1401-1408. © 2016 American Cancer Society. © 2016 American Cancer Society.

Postpartum Depression

MedlinePlus

... Education & Events Advocacy For Patients About ACOG Postpartum Depression Home For Patients Search FAQs Postpartum Depression Page ... Postpartum Depression FAQ091, December 2013 PDF Format Postpartum Depression Labor, Delivery, and Postpartum Care What are the ...

Crowding during restricted and free viewing

PubMed Central

Wallace, Julian M.; Chiu, Michael K.; Nandy, Anirvan S.; Tjan, Bosco S.

2013-01-01

Crowding impairs the perception of form in peripheral vision. It is likely to be a key limiting factor of form vision in patients without central vision. Crowding has been extensively studied in normally sighted individuals, typically with a stimulus duration of a few hundred milliseconds to avoid eye movements. These restricted testing conditions do not reflect the natural behavior of a patient with central field loss. Could unlimited stimulus duration and unrestricted eye movements change the properties of crowding in any fundamental way? We studied letter identification in the peripheral vision of normally sighted observers in three conditions: (i) a fixation condition with a brief stimulus presentation of 250 ms, (ii) another fixation condition but with an unlimited viewing time, and (iii) an unrestricted eye movement condition with an artificial central scotoma and an unlimited viewing time. In all conditions, contrast thresholds were measured as a function of target-to-flanker spacing, from which we estimated the spatial extent of crowding in terms of critical spacing. We found that presentation duration beyond 250 ms had little effect on critical spacing with stable gaze. With unrestricted eye movements and a simulated central scotoma, we found a large variability in critical spacing across observers, but more importantly, the variability in critical spacing was well correlated with the variability in target eccentricity. Our results assure that the large body of findings on crowding made with briefly presented stimuli remains relevant to conditions where viewing time is unconstrained. Our results further suggest that impaired oculomotor control associated with central vision loss can confound peripheral form vision beyond the limits imposed by crowding. PMID:23563172

The role of advocacy in occasioning community and organizational change in a medical-legal partnership.

PubMed

Anderson-Carpenter, Kaston D; Collie-Akers, Vicki; Colvin, Jeffrey D; Cronin, Katie

2013-01-01

Health disparities among low-income individuals remain a significant problem. A number of social determinants are associated with adverse health outcomes. Medical-legal partnerships address legal concerns of low-income individuals to improve health and wellness in adults and children. The Medical-Legal Partnership at Legal Aid of Western Missouri provides free direct legal services for patients with legal concerns affecting health. There is limited evidence regarding the association between advocacy-related efforts and changes within both the medical-legal partnership structure and in health-care facilities. Three health-care organizations in Kansas City, MO participated in implementing the medical-legal partnership model between 2007 and 2010. Advocacy efforts conducted by key medical-legal partnership personnel were strongly associated with changes in health-care organizations and within the medical-legal partnership structure. This study extends the current evidence base by examining the types of advocacy efforts required to bring about community and organizational changes.

Direct Demonstration of the Concept of Unrestricted Effective-Medium Approximation

NASA Technical Reports Server (NTRS)

Mishchenko, Michael I.; Dlugach, Zhanna M.; Zakharova, Nadezhda T.

2014-01-01

The modified unrestricted effective-medium refractive index is defined as one that yields accurate values of a representative set of far-field scattering characteristics (including the scattering matrix) for an object made of randomly heterogeneous materials. We validate the concept of the modified unrestricted effective-medium refractive index by comparing numerically exact superposition T-matrix results for a spherical host randomly filled with a large number of identical small inclusions and Lorenz-Mie results for a homogeneous spherical counterpart. A remarkable quantitative agreement between the superposition T-matrix and Lorenz-Mie scattering matrices over the entire range of scattering angles demonstrates unequivocally that the modified unrestricted effective-medium refractive index is a sound (albeit still phenomenological) concept provided that the size parameter of the inclusions is sufficiently small and their number is sufficiently large. Furthermore, it appears that in cases when the concept of the modified unrestricted effective-medium refractive index works, its actual value is close to that predicted by the Maxwell-Garnett mixing rule.

Comparison of the angles and corresponding moments in the knee and hip during restricted and unrestricted squats.

PubMed

Lorenzetti, Silvio; Gülay, Turgut; Stoop, Mirjam; List, Renate; Gerber, Hans; Schellenberg, Florian; Stüssi, Edgar

2012-10-01

The aim of this study was to compare the angles and corresponding moments in the knee and hip during squats. Twenty subjects performed restricted and unrestricted squats with barbell loads that were 0, ¼, and ½ their body weight. The experimental setup consisted of a motion capture system and 2 force plates. The moments were calculated using inverse dynamics. During the unrestricted squats, the maximum moments in the knee were significantly higher, and those in the hip were significantly lower than during restricted squats. At the lowest position, the maximum knee flexion angles were approximately 86° for the restricted and approximately 106° for the unrestricted techniques, whereas the maximum hip flexion angle was between 95° and 100°. The higher moments in the hip during restricted squats suggest a higher load of the lower back. Athletes who aim to strengthen their quadriceps should consider unrestricted squats because of the larger knee load and smaller back load.

Information about Musculoskeletal Conditions

MedlinePlus

... on Advocacy NOLC AAOS Liaison Program Membership Membership Information Become a Member Member Benefits Bylaws Library Diversity ... Information Statements Ethics Resources Resolutions Patient, Public & Media Information OrthoInfo Patient Education Newsroom/Media Resources Find an ...

Genetics Home Reference: aspartylglucosaminuria

MedlinePlus

... PDF) Disease InfoSearch: Aspartylglucosaminuria KidsHealth: Delayed Speech or Language Development MalaCards: aspartylglucosaminuria Orphanet: Aspartylglucosaminuria Patient Support and Advocacy ...

Going for the cure: patient interest groups and health advocacy in the United States.

PubMed

Keller, Ann C; Packel, Laura

2014-04-01

Citizen groups, though celebrated during their sudden arrival on the lobbying scene, are vastly outnumbered by groups representing elite, occupationally based interests. Sensitive to the odds that nonoccupational groups face, this study asks what factors have allowed patient groups to form and become active in federal politics. Using three distinct data sets--a survey of patient groups, content analysis of group websites, and in-depth interviews with group representatives and policy makers in Washington, DC--this study assesses the activities of patient groups in the United States and argues that patient advocacy organizations garner stability from the relatively easy provision of selective and solidary benefits. Larger patient groups are especially likely to make use of these structural advantages to pursue congressional lobbying strategies. However, even these groups seek out noncompetitive, distributive political environments. Moreover, the study finds that patient groups rarely form coalitions across diseases, forgoing the potential to collectively speak for shared patient interests.

What does meaningful look like? A qualitative study of patient engagement at the Pan-Canadian Oncology Drug Review: perspectives of reviewers and payers.

PubMed

Rozmovits, Linda; Mai, Helen; Chambers, Alexandra; Chan, Kelvin

2018-04-01

Objectives While there is wide support for patient engagement in health technology assessment, determining what constitutes meaningful (as opposed to tokenistic) engagement is complex. This paper explores reviewer and payer perceptions of what constitutes meaningful patient engagement in the Pan-Canadian Oncology Drug Review process. Methods Qualitative interview study comprising 24 semi-structured telephone interviews. A qualitative descriptive approach, employing the technique of constant comparison, was used to produce a thematic analysis. Results Submissions from patient advocacy groups were seen as meaningful when they provided information unavailable from other sources. This included information not collected in clinical trials, information relevant to clinical trade-offs and information about aspects of lived experience such as geographic differences and patient and carer priorities. In contrast, patient submissions that relied on emotional appeals or lacked transparency about their own methods were seen as detracting from the meaningfulness of patient engagement by conflating health technology assessment with other functions of patient advocacy groups such as fundraising or public awareness campaigns, and by failing to provide credible information relevant to deliberations. Conclusions This study suggests that misalignment of stakeholder expectations remains an issue even for a well-regarded health technology assessment process that has promoted patient engagement since its inception. Support for the technical capacity of patient groups to participate in health technology assessment is necessary but not sufficient to address this issue fully. There is a fundamental tension between the evidence-based nature of health technology assessment and the experientially oriented culture of patient advocacy. Divergent notions of what constitutes evidence and how it should be used must also be addressed.

Surgery for Stress Urinary Incontinence

MedlinePlus

... Events Advocacy For Patients About ACOG Surgery for Stress Urinary Incontinence Home For Patients Search FAQs Surgery ... Incontinence FAQ166, July 2017 PDF Format Surgery for Stress Urinary Incontinence Special Procedures What is stress urinary ...

Good Health Before Pregnancy: Preconception Care

MedlinePlus

... Advocacy For Patients About ACOG Good Health Before Pregnancy: Preconception Care Home For Patients Search FAQs Good ... FAQ056, April 2017 PDF Format Good Health Before Pregnancy: Preconception Care Pregnancy What is a preconception care ...

Patient advocacy and advance care planning in the acute hospital setting.

PubMed

Seal, Marion

2007-01-01

The aim of this study was to explain the role of patient advocacy in the Advance Care Planning (ACP-ing) process. Nurses rate prolonging the dying process with inappropriate measures as their most disturbing ethical issue and protecting patients' rights to be of great concern (Johnston et al 2002). Paradoxically ethical codes assume nurses have the autonomy to uphold patients' health-care choices. Advance Directives (AD) designed to improve end-of-life care are poorly taken up and acute hospitals are generally not geared for the few they receive. The Respecting Patient Choices Program (RPCP) improves AD utilisation through providing a supportive framework for ACP-ing and primarily equipping nurses as RPC consultants. Assisting patients with this process requires attributes consistent with patient advocacy arising out of nursing's most basic tenet, the care of others. Likert Scales survey administered pre and six months post-intervention to pilot and control groups, with coinciding focus groups. Selected wards in an acute care public hospital in South Australia. Nurses on the palliative care, respiratory, renal and colo-rectal pilot wards and the haem-oncology, coronary care, cardiology and neurology/geriatric control wards. The RPCP during the 2004-2005 South Australian pilot of the (RPCP). The organisational endorsement of ACP-ing gave nurses the autonomy to be patient advocates with respect to end-of-life care, reconciling clinical practice to their code of ethics and easing distress about prolonging the dying process inappropriately. Statistically significant survey results in the post-intervention group showed nurses experienced: encouragement to ensure patients could make informed choices about their end-of-life treatment (84%); the ability to uphold these wishes in practice (73%); and job satisfaction from delivering appropriate end-of-life care (67%); compared to approximately half (42-55%) of respondents in the pre-intervention and control groups. Focus group participants shared that it used to be hard to advocate for patients, but now they could act legitimately and felt ethically comfortable about ensuing end-of-life-care. Findings suggested patient advocacy, fostered by the supportive RPC environment, effectuates the ACP-ing process. It is recommended that the RPCP should be recognised and developed as integral to promoting quality end-of-life assurance and associated job satisfaction.

Nursing implications of personalized and precision medicine.

PubMed

Vorderstrasse, Allison A; Hammer, Marilyn J; Dungan, Jennifer R

2014-05-01

Identify and discuss the nursing implications of personalized and precision oncology care. PubMed, CINAHL. The implications in personalized and precision cancer nursing care include interpretation and clinical use of novel and personalized information including genetic testing; patient advocacy and support throughout testing, anticipation of results and treatment; ongoing chronic monitoring; and support for patient decision-making. Attention must also be given to the family and ethical implications of a personalized approach to care. Nurses face increasing challenges and opportunities in communication, support, and advocacy for patients given the availability of advanced testing, care and treatment in personalized and precision medicine. Nursing education and continuing education, clinical decision support, and health systems changes will be necessary to provide personalized multidisciplinary care to patients, in which nurses play a key role. Copyright © 2014 Elsevier Inc. All rights reserved.

Self-advocacy training for cancer survivors. The Cancer Survival Toolbox.

PubMed

Walsh-Burke, K; Marcusen, C

1999-01-01

With the advent of managed healthcare, self-advocacy has been identified as an essential skill for cancer survivors. This article describes a self-advocacy training program, the Cancer Survival Toolbox, developed through a unique collaborative effort by the National Coalition for Cancer Survivorship, the Association of Oncology Social Work, and the Oncology Nursing Society. Self-advocacy training is provided in audiotape format, as well as through the Internet and in interactive groups. The need for this training was established through surveys completed by 569 cancer survivors and 833 oncology professionals. Essential skills were identified through a literature review, and the content of the training was pilot tested with bicoastal groups of cancer survivors and with feedback from representatives of 15 national cancer organizations. While the majority of the 569 respondents to the survivor survey were highly educated and between the ages of 31 and 60 years, fewer than half reported that when they first received a diagnosis of cancer they were able to communicate their needs effectively, had the skills necessary to make decisions, or were able to negotiate with healthcare providers, insurers, and employers. Results of the survey of professional oncology nurses and social workers also supported the need for self-advocacy training. Fewer than one third of the 833 respondents to the professional survey reported that their patients who had received new diagnoses of cancer had essential self-advocacy skills. This self-advocacy training program is currently available on audiotape in English and Spanish. It is available in print in Chinese on the Internet. Data from the pilot groups indicate the program effectively addresses the self-advocacy skills of communication, information seeking, problem solving, decision making, and negotiating. Data are currently being collected to assess the efficacy of the audiotape format and the impact of the training on survivors and professionals. Future plans include training oncology professionals to teach these skills and to work collaboratively with survivors in advocacy efforts. Additional programs designed to address the needs of the uninsured as well as older adult and pediatric survivor populations are in development.

Athletes' Perception of Athletic Trainer Empathy: How Important Is It?

PubMed

David, Shannon; Larson, Mary

2018-01-01

Health care practitioners face increasing expectations to provide patient-centered care. Communication skills, specifically empathy, are critical in the provision of patient-centered care. Past work correlates empathy with improved patient satisfaction, compliance, and treatment outcomes. In particular, a predictive relationship exists between clients' ratings of their clinician's empathy and treatment outcomes. There is a dearth of studies examining empathy using qualitative methodology and factors of empathy in athletic training. To gain an understanding of athletes' perceptions of empathy in the patient-clinician relationship. Qualitative interviews were completed using grounded-theory techniques. A quiet office. A typical, purposeful sample of 15 college-age Division I student-athletes (8 female, 7 male; 19.3 ± 1.2 y) from a variety of sports (football, wrestling, volleyball, baseball, etc) participated. Researchers utilized an interview protocol designed to understand the factors of empathy related to athletic training. The interview protocol established a concept of empathy to help facilitate discussion of ideas. Data were transcribed, coded, and analyzed for themes and patterns using grounded-theory techniques. Trustworthiness of the data was ensured using an external auditor, member checks, and methods triangulation. Five themes described empathy: advocacy, communication, approachability, access, and competence. Advocacy was described as the athletic trainer (AT) representing the patient. Communication was the ability to listen reflectively; approachability emerged as the comfort and personal connection the patient felt with the AT. Access and technical competence were bridges required for the development of empathy. Providing patient-centered care facilitated by developing good patient-clinician relationships is critical in enabling the best treatment outcomes. ATs portray empathy through advocacy, communication, and approachability. Empathy improves the patient-clinician relationship and is critical for patient-centered care delivered by ATs.

Putting A Face On Rare Diseases | NIH MedlinePlus the Magazine

MedlinePlus

... NIH's event has been "Patients & Researchers—Partners for Life." This slogan aligns with NCATS' philosophy that researchers must work closely with patients, families, caregivers, and advocacy groups to maximize the chances ...

Blood glucose monitoring: an overview.

PubMed

Whitmore, Catherine

Glucose monitoring is done to obtain information on blood glucose levels to ensure a therapeutic regimen; the aim is to maintain consistent glucose levels and avoid hypoglycaemia and hyperglycaemia. Self-management is central to diabetes control. Diabetes is individual, so self-monitoring of blood glucose (SMBG) targets and frequency of testing must be decided to meet each patient's needs. Nurses have key roles in education and advocacy. They can educate patients on what affects glucose levels, why they need to carry out SMBG, and how to interpret and act on the results. Nurses also match glucose monitoring meters to patients' needs by considering ease of use, technical features and lifestyle. Access to testing supplies is sometimes restricted through blanket policies and nurses have an advocacy role here in challenging inappropriate restrictions.

From loyalty to advocacy: a new metaphor for nursing.

PubMed

Winslow, G R

1984-06-01

An evolving transformation in nursing ethics is examined in terms of two basic metaphors of the nurse's role and its norms and virtues. Early discussions of nursing ethics portrayed nursing as military service in the battle against disease, associated with the virtue of loyalty and with the norms of obedience and the maintenance of patient confidence in physicians as authority figures. During the past decade, a metaphor of the nurse as advocate of patients' rights has largely replaced the older image. The author supports this change while cautioning that attention should be given to clarifying the meaning of advocacy, revising state laws to allow for expanded nursing roles, educating patients to accept the nurse as advocate, teaching nurses to cope with controversy, and identifying a legitimate place for loyalty to one's associates.

The Nurse Advocate in End-of-Life Care

PubMed Central

Hebert, Kathy; Moore, Harold; Rooney, Joan

2011-01-01

End-of-life nursing encompasses many aspects of care: pain and symptom management, culturally sensitive practices, assisting patients and their families through the death and dying process, and ethical decisionmaking. Advocacy has been identified as a key core competency for the professional nurse, yet the literature reveals relevant barriers to acquiring this skill. Challenges exist, such as limitations in nursing school curricula on the death and dying process, particularly in multicultural settings; differing policies and practices in healthcare systems; and various interpretations of end-of-life legal language. Patricia Benner's conceptual model of advocacy behaviors in end-of-life nursing provides the framework in which nurses can become effective patient advocates. Developing active listening and effective communication skills can enhance the nurse-patient trust relationship and create a healing environment. PMID:22190882

Expected Time to Return to Athletic Participation After Stress Fracture in Division I Collegiate Athletes.

PubMed

Miller, Timothy L; Jamieson, Marissa; Everson, Sonsecharae; Siegel, Courtney

2017-12-01

Few studies have documented expected time to return to athletic participation after stress fractures in elite athletes. Time to return to athletic participation after stress fractures would vary by site and severity of stress fracture. Retrospective cohort study. Level 3. All stress fractures diagnosed in a single Division I collegiate men's and women's track and field/cross-country team were recorded over a 3-year period. Site and severity of injury were graded based on Kaeding-Miller classification system for stress fractures. Time to return to full unrestricted athletic participation was recorded for each athlete and correlated with patient sex and site and severity grade of injury. Fifty-seven stress fractures were diagnosed in 38 athletes (mean age, 20.48 years; range, 18-23 years). Ten athletes sustained recurrent or multiple stress fractures. Thirty-seven injuries occurred in women and 20 in men. Thirty-three stress fractures occurred in the tibia, 10 occurred in the second through fourth metatarsals, 3 occurred in the fifth metatarsal, 6 in the tarsal bones (2 navicular), 2 in the femur, and 5 in the pelvis. There were 31 grade II stress fractures, 11 grade III stress fractures, and 2 grade V stress fractures (in the same patient). Mean time to return to unrestricted sport participation was 12.9 ± 5.2 weeks (range, 6-27 weeks). No significant differences in time to return were noted based on injury location or whether stress fracture was grade II or III. The expected time to return to full unrestricted athletic participation after diagnosis of a stress fracture is 12 to 13 weeks for all injury sites. Athletes with grade V (nonunion) stress fractures may require more time to return to sport.

Health rights in the balance: the case against perinatal shackling of women behind bars.

PubMed

Dignam, Brett; Adashi, Eli Y

2014-12-11

Rationalized for decades on security grounds, perinatal shackling entails the application of handcuffs, leg irons, and/or waist shackles to the incarcerated woman prior to, during, and after labor and delivery. During labor and delivery proper, perinatal shackling may entail chaining women to the hospital bed by the ankle, wrist, or both. Medically untenable, legally challenged, and ever controversial, perinatal shackling remains the standard of practice in most US states despite sustained two-decades-long efforts by health rights legal advocates, human rights organizations, and medical professionals. Herein we review the current statutory, regulatory, legal, and medical framework undergirding the use of restraints on pregnant inmates and explore potential avenues of redress and relief to this challenge. We also recognize the courage of the women whose stories are being told. If history is any guide, the collective thrust of domestic and international law, attendant litigation, dedicated advocacy, and strength of argument bode well for continued progress toward restraint-free pregnancies in correctional settings. Copyright © 2014 Dignam and Adashi. This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original author and source are credited.

Attitudes of Male Unrestricted Line (URL) Officers Towards Integration of Women into Their Designators and Towards Women in Combat.

DTIC Science & Technology

1983-12-01

APR 1 11984 THESIS D ,. *. ATTITUDES OF MALE UNRESTRICTED LINE (URL) OFFICERS𔃿 TOWARDS INTEGRATION OF WOMEN INTO THEIR DESIGNATORS AND TOWARDS WOMEN... Male Unrestricted Line (URL) Master’s Thesis Officers Towards Integration of Women into their December, 1983 ,- Designators and Towards Women in...Integration of Women sq. AMYRACT (CtMue an rew side i moeep and Idenllifr blekn mb ) Using Rand Survey data, this thesis examines the attitudes of male Unre

Physician advocacy in Western medicine: a 21st century challenge.

PubMed

Bagshaw, Philip; Barnett, Pauline

2017-12-01

Physician advocacy occurs when doctors speak up for the health and healthcare of patients and communities. Historically, this was strong in some Western countries with doctors finding that it enhanced their authority, prestige and power. But it weakened in the 20th century when the biomedical model of heath triumphed and medicine became a dominant profession. In the second part of the 20th century, this dominance was threatened by political, technological and socioeconomic forces. These weakened medicine's state support, brought it under managerial control and undermined the social contract on which trust between doctors and the community was based. Defence of the profession was assumed by medical colleges, societies and associations. They had some success in retaining professional autonomy but did not undertake open advocacy, particularly on social justice issues, and did not therefore enhance their standing in the community. Opinion is divided on the level of advocacy that it is ethically proper for the medical profession to employ. Some contend doctors should only advise authorities when expert opinion is requested. Others contend doctors should speak out proactively on all health issues, and that collective action of this type is a hallmark of professionalism. This lack of consensus needs to be debated. Recent developments such as clinical leadership have not revitalised physician advocacy. However, continued deterioration of the UK National Health Service has led some English medical colleges to take up open advocacy in its defence. It is to be seen whether medical colleges elsewhere follow suit, as and when their healthcare systems are similarly threatened.

Tragedy into policy: a quantitative study of nurses' attitudes toward patient advocacy activities.

PubMed

Black, Lisa M

2011-06-01

In 2007 and 2008, 115 patients were found to be either certainly or presumptively infected with the hepatitis C virus through the reuse of contaminated medication vials at two southern Nevada endoscopy clinics. A subsequent joint investigation by federal and state agencies found multiple breaches of infection control protocols. There was also strong anecdotal evidence that among clinic staff, unsafe patient care conditions often went unreported because of a general fear of retaliation. At the request of the Nevada legislature's Legislative Committee on Health Care, a study was conducted to examine Nevada RNs' experiences with workplace attitudes toward patient advocacy activities. This article presents the study findings and reviews how one public health tragedy led to the creation of effective health care policy. A study questionnaire was developed and tested for reliability and validity. Questionnaires were then sent to an initial sample of 1,725 Nevada RNs, representing 10% of all RNs in the Nevada State Board of Nursing database with active licenses and current Nevada addresses. The response rate was modest at 33% (564 respondents). Of those who responded, 34% indicated that they'd been aware of a patient care condition that could have caused harm to a patient, yet hadn't reported it. The most common reasons given for nonreporting included fears of workplace retaliation (44%) and a belief that nothing would come of reports that were made (38%). The study findings underscore the need for a shift in organizational culture toward one that encourages clear and open communication when patient safety may be in jeopardy. These findings were ultimately used to support the passage of whistleblower protection legislation in Nevada. Las Vegas hepatitis C outbreak, patient advocacy, whistleblower.

The impact of generic-only drug benefits on patients' use of inhaled corticosteroids in a Medicare population with asthma

PubMed Central

Fung, Vicki; Tager, Ira B; Brand, Richard; Newhouse, Joseph P; Hsu, John

2008-01-01

Background Patients face increasing insurance restrictions on prescription drugs, including generic-only coverage. There are no generic inhaled corticosteroids (ICS), which are a mainstay of asthma therapy, and patients pay the full price for these drugs under generic-only policies. We examined changes in ICS use following the introduction of generic-only coverage in a Medicare Advantage population from 2003–2004. Methods Subjects were age 65+, with asthma, prior ICS use, and no chronic obstructive pulmonary disorder (n = 1,802). In 2004, 74.0% switched from having a $30 brand-copayment plan to a generic-only coverage plan (restricted coverage); 26% had $15–25 brand copayments in 2003–2004 (unrestricted coverage). Using linear difference-in-difference models, we examined annual changes in ICS use (measured by days-of-supply dispensed). There was a lower-cost ICS available within the study setting and we also examined changes in drug choice (higher- vs. lower-cost ICS). In multivariable models we adjusted for socio-demographic, clinical, and asthma characteristics. Results In 2003 subjects had an average of 188 days of ICS supply. Restricted compared with unrestricted coverage was associated with reductions in ICS use from 2003–2004 (-15.5 days-of-supply, 95% confidence interval (CI): -25.0 to -6.0). Among patients using higher-cost ICS drugs in 2003 (n = 662), more restricted versus unrestricted coverage subjects switched to the lower-cost ICS in 2004 (39.8% vs. 10.3%). Restricted coverage was not associated with decreased ICS use (2003–2004) among patients who switched to the lower-cost ICS (18.7 days-of-supply, CI: -27.5 to 65.0), but was among patients who did not switch (-38.6 days-of-supply, CI: -57.0 to -20.3). In addition, restricted coverage was associated with decreases in ICS use among patients with both higher- and lower-risk asthma (-15.0 days-of-supply, CI: -41.4 to 11.44; and -15.6 days-of-supply, CI: -25.8 to -5.3, respectively). Conclusion In this elderly population, patients reduced their already low ICS use in response to losing drug coverage. Switching to the lower-cost ICS mitigated reductions in use among patients who previously used higher-cost drugs. Additional work is needed to assess barriers to switching ICS drugs and the clinical effects of these drug use changes. PMID:18638405

Families of Children with Disabilities in Elementary and Middle School: Advocacy Models and Strategies.

ERIC Educational Resources Information Center

Alper, Sandra; And Others

1996-01-01

This article describes models and methods of advocacy for families of children with disabilities in elementary and middle school, including self-advocacy, social support advocacy, interpersonal advocacy, and legal advocacy. Issues for parents during these years are discussed, as are the role and needs of siblings. Advocacy is seen as a dynamic…

Genetics Home Reference: myotonia congenita

MedlinePlus

... Manual Consumer Version: Congenital Myopathies Orphanet: Thomsen and Becker disease Patient Support and Advocacy Resources (3 links) Muscular Dystrophy Association National Organization for Rare Disorders (NORD) Resource ...

A pilot study evaluating the effects of a youth advocacy program on youth readiness to advocate for environment and policy changes for obesity prevention.

PubMed

Millstein, Rachel A; Woodruff, Susan I; Linton, Leslie S; Edwards, Christine C; Sallis, James F

2016-12-01

Youth advocacy for obesity prevention is a promising but under-evaluated intervention. The aims of this study are to evaluate a youth advocacy program's outcomes related to youth perceptions and behaviors, develop an index of youth advocacy readiness, and assess potential predictors of advocacy readiness. Youth ages 9-22 in an advocacy training program (n = 92 matched pairs) completed surveys before and after training. Youth outcomes and potential predictors of advocacy readiness were assessed with evaluated scales. All 20 groups who completed the evaluation study presented their advocacy projects to a decision maker. Two of six perception subscales increased following participation in the advocacy program: self-efficacy for advocacy behaviors (p < .001) and participation in advocacy (p < .01). Four of five knowledge and skills subscales increased: assertiveness (p < .01), health advocacy history (p < .001), knowledge of resources (p < .01), and social support for health behaviors (p < .001). Youth increased days of meeting physical activity recommendations (p < .05). In a mixed regression model, four subscales were associated with the advocacy readiness index: optimism for change (B = 1.46, 95 % CI = .49-2.44), sports and physical activity enjoyment (B = .55, 95 % CI = .05-1.05), roles and participation (B = 1.81, 95 % CI = .60-3.02), and advocacy activities (B = 1.49, 95 % CI = .64-2.32). The youth advocacy readiness index is a novel way to determine the effects of multiple correlates of advocacy readiness. Childhood obesity-related advocacy training appeared to improve youths' readiness for advocacy and physical activity.

Step 1: Offers All Birthing Mothers Unrestricted Access to Birth Companions, Labor Support, Professional Midwifery Care

PubMed Central

Leslie, Mayri Sagady; Storton, Sharon

2007-01-01

The first step of the Ten Steps of Mother-Friendly Care insures that women have access to a wide variety of support in labor and during the pregnancy and postpartum periods: unrestricted access to birth companions of their choice, including family and friends; unrestricted access to continuous emotional and physical support from a skilled woman such as a doula; and access to midwifery care. The rationales for the importance of each factor and the evidence to support those rationales are presented. PMID:18523678

Safe practices and financial considerations in using oral chemotherapeutic agents.

PubMed

Bartel, Sylvia B

2007-05-01

Safe handling practices and financial concerns associated with oral chemotherapy in non-traditional settings are discussed. Oral chemotherapy may pose a risk to patients because of a narrow therapeutic index, complex dosing regimen, dispensing by community pharmacists without prescription order review by an oncology pharmacist or nurse, or self-administration in the home or another nontraditional setting, where patient monitoring is infrequent. Errors in prescribing, dispensing, and administration and patient or caregiver misunderstandings are potential problems with the use of oral chemotherapy that need to be addressed when developing safe practices. Changes in Medicare pharmaceutical reimbursement rates and rules need to be monitored because they have the potential to affect patient care and outcomes. Patient assistance programs and advocacy groups can help alleviate financial concerns associated with oral chemotherapy. Consensus guidelines specific to safe handling of oral chemotherapy in the home or other nontraditional setting need to be developed. Also, healthcare providers must understand reimbursement and provide direction to patients when patient assistance programs or advocacy groups can assist with the financial challenges of oral chemotherapy.

Sinusitis: Special Considerations for Aging Patients

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Genetics Home Reference: hyperprolinemia

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... Hyperprolinemia type 1 Orphanet: Hyperprolinemia type 2 Screening, Technology and Research in Genetics Patient Support and Advocacy Resources (3 links) Children Living with Inherited Metabolic Diseases National Organization for ...

Are Canadian postgraduate training programs meeting the health advocacy needs of obstetrics and gynaecology residents?

PubMed

Hakim, Julie; Black, Amanda; Gruslin, Andrée; Fleming, Nathalie

2013-06-01

Health advocacy (HA) is a core competency in Canadian obstetrics and gynaecology postgraduate programs. Our objectives were to assess awareness and understanding of the health advocate role among trainees, their current HA training and exposure, and the desire and needs for future HA training. An anonymous, cross-sectional, Internet-based, self-reported health advocacy questionnaire was distributed to Canadian obstetrics and gynaecology trainees. Descriptive analysis was conducted for all study variables. Chi-square tests, Cochran-Armitage trend test, and Fisher exact test were performed where appropriate. Most trainees (93.9% of respondents) were aware of the CanMEDS HA role and that it is a training objective (92.9%). Only 52.4% had clear objectives while 58.4% understood the role requirements. Most trainees (95.1% of respondents) felt HA was important to address during training. Only 30.4% had HA training, and just 36.3% felt their training needs were addressed. Training included teaching sessions (11.9%), clinical teaching (4.7%), and role modelling (4.7%). Although 82.9% of respondents had HA opportunities with patients, there were fewer opportunities at community (45.1%) and societal (30.0%) levels. Awareness of community groups and activities was low (28.6%), and few (20.0%) had participated in community advocacy programs during their residency. Incorporating advocacy activities into training was valued (80.0%). Many residents supported mandatory HA training (60.0%), more training time on HA experiences (66.3%), and HA experiences during protected time (71.3%). Awareness of and interest in the HA role is high, but clear objectives and training are lacking or inadequate. A standardized curriculum would ensure health advocacy exposure and emphasize active participation in community and societal activities. Trainees support this training during protected time.

Effect of long-term hypokinesia on the electrolytic composition of the blood in patients with osteoarticular tuberculosis

NASA Technical Reports Server (NTRS)

Zakutaeva, V. P.

1980-01-01

Seventy-six patients with osteoarticular tuberculosis were divided into two groups, one of which was required to maintain strict bed rest and the other of which was allowed unrestricted motor activity. A study of blood electrolyte composition in the two groups revealed that bed rest for these patients results in decreased plasma potassium calcium, and magnesium content, but that these indices improved after the patients were allowed to move freely. The study suggests that patients with osteoarticular tuberculosis who are on bed rest be carefully observed for alterations in blood electrolytes and that proper electrolyte balance be maintained.

Genetics Home Reference: hypermethioninemia

MedlinePlus

... Psychomotor retardation due to S-adenosylhomocysteine hydrolase deficiency Screening, Technology and Research in Genetics Patient Support and Advocacy Resources (1 link) Children Living with Inherited Metabolic Diseases Scientific Articles on ...

Effective advocacy for patients with inflammatory bowel disease: communication with insurance companies, school administrators, employers, and other health care overseers.

PubMed

Jaff, Jennifer C; Arnold, Janis; Bousvaros, Athos

2006-08-01

In addition to their physical challenges, children and adolescents with inflammatory bowel disease (IBD) living in the United States face a number of administrative and regulatory hurdles that affect their quality of life. This article, written by a physician, attorney/patient advocate, and social worker, discusses a number of these challenges and describes how the provider can help his or her patient overcome them. Specifically, the article discusses 4 areas in detail: appeals of denials of coverage from insurance companies and third party payors; assisting children with IBD with classroom and school accommodations; assisting uninsured children in obtaining Social Security benefits; and aiding a parent to care for their child using the Family and Medical Leave Act. Although this article has a pediatric focus, adults have similar advocacy needs. Case examples and sample letters to third-party payors, schools, and employers are included in this article.

A bridge between cultures: interpreters' perspectives of consultations with migrant oncology patients.

PubMed

Butow, Phyllis N; Lobb, Elizabeth; Jefford, Michael; Goldstein, David; Eisenbruch, Maurice; Girgis, Afaf; King, Madeleine; Sze, Ming; Aldridge, Lynley; Schofield, Penelope

2012-02-01

Migration is increasing worldwide. In previous research into people with cancer from culturally and linguistically diverse backgrounds, interpreter accuracy, professionalism and continuity have emerged as key concerns for patients. Little is known about interpreters' perceptions of their role and the challenges they face. This study aimed to obtain their perspective. Thirty interpreters (Greek n = 7, Chinese n = 11, and Arabic n = 12) participated in four focus groups which were audio-taped, transcribed and analysed for themes using N-Vivo software. Skills as an interpreter were broadly perceived as conveying information accurately, being confidential and impartial. Three broad dilemmas faced by interpreters emerged: accuracy versus understanding; translating only versus cultural advocacy and sensitivity; and professionalism versus providing support. Some saw themselves as merely an accurate conduit of information, while others saw their role in broader terms, encompassing patient advocacy, cultural brokerage and provision of emotional support. Perceived challenges in their role included lack of continuity, managing their own emotions especially after bad news consultations, and managing diverse patient and family expectations. Training and support needs included medical terminology, communication and counselling skills and debriefing. Interpreters suggested that oncologists check on interpreter/patient's language or dialect compatibility; use lay language and short sentences; and speak in the first person. Resolving potential conflicts between information provision and advocacy is an important area of cross-cultural communication research. Further training and support is required to enhance interpreters' competence in managing delicate situations from a professional, cultural and psychological perspective; and to assist doctors to collaborate with interpreters to ensure culturally competent communication. Ultimately, this will improve interpreters' well-being and patient care.

Genetics Home Reference: geleophysic dysplasia

MedlinePlus

... Heart Institute: Valve Disease Patient Support and Advocacy Resources (6 links) Human Growth Foundation Little People of America Little People UK Resource list from the University of Kansas Medical Center: ...

Motors of influenza vaccination uptake and vaccination advocacy in healthcare workers: Development and validation of two short scales.

PubMed

Vallée-Tourangeau, Gaëlle; Promberger, Marianne; Moon, Karis; Wheelock, Ana; Sirota, Miroslav; Norton, Christine; Sevdalis, Nick

2017-09-25

Healthcare workers (HCWs) are an important priority group for vaccination against influenza, yet, flu vaccine uptake remains low among them. Psychosocial studies of HCWs' decisions to get vaccinated have commonly drawn on subjective expected utility models to assess predictors of vaccination, assuming HCWs' choices result from a rational information-weighing process. By contrast, we recast those decisions asa commitment to vaccination and we aimed to understand why HCWs may want to (rather than believe they need to) get vaccinated against the flu. This article outlines the development and validation of a 9-item measure of cognitive empowerment towards flu vaccination (MoVac-flu scale) and an 11-item measure of cognitive empowerment towards vaccination advocacy. Both scales were administered to 784 frontline NHS HCWs with direct patient contact between June 2014 and July 2015. The scales exhibited excellent reliability and a clear unidimensional factor structure. An examination of the nomological network of the cognitive empowerment construct in relation to HCWs' vaccination against the flu revealed that this construct was distinct from traditional measures of risk perception and the strongest predictor of HCWs' decisions to vaccinate. Similarly, cognitive empowerment in relation to vaccination advocacy was a strong predictor of HCWs' engagement with vaccination advocacy. These findings suggest that the cognitive empowerment construct has important implications for advancing our understanding of HCWs' decisions to vaccinate as well as their advocacy behavior. Copyright © 2017 The Authors. Published by Elsevier Ltd.. All rights reserved.

Understanding patient perceptions of shared decision making.

PubMed

Shay, L Aubree; Lafata, Jennifer Elston

2014-09-01

This study aims to develop a conceptual model of patient-defined SDM, and understand what leads patients to label a specific, decision-making process as shared. Qualitative interviews were conducted with 23 primary care patients following a recent appointment. Patients were asked about the meaning of SDM and about specific decisions that they labeled as shared. Interviews were coded using qualitative content analysis. Patients' conceptual definition of SDM included four components of an interactive exchange prior to making the decision: both doctor and patient share information, both are open-minded and respectful, patient self-advocacy, and a personalized physician recommendation. Additionally, a long-term trusting relationship helps foster SDM. In contrast, when asked about a specific decision labeled as shared, patients described a range of interactions with the only commonality being that the two parties came to a mutually agreed-upon decision. There is no one-size-fits all process that leads patients to label a decision as shared. Rather, the outcome of "agreement" may be more important than the actual decision-making process for patients to label a decision as shared. Studies are needed to better understand how longitudinal communication between patient and physicians and patient self-advocacy behaviors affect patient perceptions of SDM. Published by Elsevier Ireland Ltd.

Hepatic Encephalopathy

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Genetics Home Reference: carnitine-acylcarnitine translocase deficiency

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Genetics Home Reference: N-acetylglutamate synthase deficiency

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... Hyperammonemia due to N-acetylglutamate synthase deficiency Screening, Technology and Research in Genetics Patient Support and Advocacy Resources (4 links) Children Living with Inherited Metabolic Diseases National Organization for ...

Community health workers and the Patient Protection and Affordable Care Act: an opportunity for a research, advocacy, and policy agenda.

PubMed

Shah, Megha K; Heisler, Michele; Davis, Matthew M

2014-02-01

Community health workers (CHWs), who have been shown to be effective in multiple roles in the provision of culturally appropriate health care in a variety of settings, have the potential to be important members of an interdisciplinary health care team. Recent efforts have started to explore how best to integrate CHWs into the health system. However, to date, there has been limited policy guidance, support, or evidence on how best to achieve this on a larger scale. The Patient Protection and Affordable Care Act (ACA), through several provisions, provides a unique opportunity to create a unified framework for workforce integration and wider utilization of CHWs. This review identifies four major opportunities to further the research, advocacy, and policy agenda for CHWs.

Community Health Workers Promote Civic Engagement and Organizational Capacity to Impact Policy.

PubMed

Sabo, Samantha; Flores, Melissa; Wennerstrom, Ashley; Bell, Melanie L; Verdugo, Lorena; Carvajal, Scott; Ingram, Maia

2017-12-01

Community health workers (CHW) have historically served to link structurally vulnerable populations to broad support systems. Emerging evidence suggests that CHWs engage in various forms of advocacy to promote policy and systems change. We assessed the impact of CHW community advocacy on community change, defined as civic engagement, organizational capacity and policy and systems change. Data are drawn from the 2014 National Community Health Worker Advocacy Survey (N = 1776) aimed to identify the state of the CHW profession, and their impact on health disparities through community advocacy and policy engagement. Our primary analysis used multiple linear regression to assess the association between CHW advocacy and community change. As predicted, there was a significant, positive association between CHW advocacy and change in community conditions. Additionally, both adjusted and sensitivity models had similar standardized beta estimates for advocacy, and adjusted R 2 statistics. CHW advocacy predicts positive change in community conditions and further advances the CHW Community Advocacy Framework designed to support and monitor CHW community advocacy to reduce health disparities through advocacy and policy change.

Kinematics of the trunk and the lower extremities during restricted and unrestricted squats.

PubMed

List, Renate; Gülay, Turgut; Stoop, Mirjam; Lorenzetti, Silvio

2013-06-01

Squatting is a common strength training exercise used for rehabilitation, fitness training, and in preparation for competition. Knowledge about the loading and the motion of the back during the squat exercise is crucial to avoid overuse or injury. The aim of this study was the measurement and comparison of the kinematics of the lower leg, trunk, and spine during unrestricted and restricted (knees are not allowed beyond toes) squats. A total of 30 subjects performed unrestricted and restricted barbell squats with an extra load of 0, 25, and 50% bodyweight. Motion was tracked using a 12-camera Vicon system. A newly developed marker set with 24 trunk and 7 pelvic markers allowed us to measure 3D segmental kinematics between the pelvic and the lumbar regions, between the lumbar and the thoracic segments, and the sagittal curvatures of the lumbar and the thoracic spine. In an unrestricted squat, the angle of the knee is larger and the range of motion (ROM) between the lumbar and the thoracic segments is significantly smaller compared with a restricted squat (p < 0.05). The studied subjects showed significantly increased ROM for thoracic curvature during restricted squats. The unrestricted execution of a squat leads to a larger ROM in the knee and smaller changes in the curvature of the thoracic spine and the range of smaller segmental motions within the trunk. This execution in turn leads to lower stresses in the back. To strengthen the muscles of the leg, the unrestricted squat may be the best option for most people. Thus, practitioners should not be overly strict in coaching against anterior knee displacement during performance of the squat.

Restricted vs. unrestricted wheel running in mice: Effects on brain, behavior and endocannabinoids.

PubMed

Biedermann, Sarah V; Auer, Matthias K; Bindila, Laura; Ende, Gabriele; Lutz, Beat; Weber-Fahr, Wolfgang; Gass, Peter; Fuss, Johannes

2016-11-01

Beneficial effects of voluntary wheel running on hippocampal neurogenesis, morphology and hippocampal-dependent behavior have widely been studied in rodents, but also serious side effects and similarities to stereotypy have been reported. Some mouse strains run excessively when equipped with running wheels, complicating the comparability to human exercise regimes. Here, we investigated how exercise restriction to 6h/day affects hippocampal morphology and metabolism, stereotypic and basal behaviors, as well as the endocannabinoid system in wheel running C57BL/6 mice; the strain most commonly used for behavioral analyses and psychiatric disease models. Restricted and unrestricted wheel running had similar effects on immature hippocampal neuron numbers, thermoregulatory nest building and basal home-cage behaviors. Surprisingly, hippocampal gray matter volume, assessed with magnetic resonance (MR) imaging at 9.4 Tesla, was only increased in unrestricted but not in restricted runners. Moreover, unrestricted runners showed less stereotypic behavior than restricted runners did. However, after blockage of running wheels for 24h stereotypic behavior also increased in unrestricted runners, arguing against a long-term effect of wheel running on stereotypic behavior. Stereotypic behaviors correlated with frontal glutamate and glucose levels assessed by 1 H-MR spectroscopy. While acute running increased plasma levels of the endocannabinoid anandamide in former studies in mice and humans, we found an inverse correlation of anandamide with the daily running distance after long-term running. In conclusion, although there are some diverging effects of restricted and unrestricted running on brain and behavior, restricted running does not per se seem to be a better animal model for aerobic exercise in mice. Copyright © 2016 Elsevier Inc. All rights reserved.

My three shrinks: Personal stories of social media exploration.

PubMed

Daviss, Steve; Hanson, Annette; Miller, Dinah

2015-04-01

Three psychiatrist authors illustrate the impact of social media on their professional lives by reflecting on personal stories about their experiences with social media. They reflect on their experiences with listservs, chat rooms, online forums, blogs, podcasts, and other interactive media, while recounting actual stories involving those media. The impact of social media on professional advocacy across broad populations is addressed. In addition, the use of social media in educating psychiatric trainees and informing forensic evaluations is discussed. Finally, social media as a tool for enhancing consumer advocacy and addressing controversial patient safety procedures in emergency settings is discussed.

Nonparametric estimation of median survival times with applications to multi-site or multi-center studies.

PubMed

Rahbar, Mohammad H; Choi, Sangbum; Hong, Chuan; Zhu, Liang; Jeon, Sangchoon; Gardiner, Joseph C

2018-01-01

We propose a nonparametric shrinkage estimator for the median survival times from several independent samples of right-censored data, which combines the samples and hypothesis information to improve the efficiency. We compare efficiency of the proposed shrinkage estimation procedure to unrestricted estimator and combined estimator through extensive simulation studies. Our results indicate that performance of these estimators depends on the strength of homogeneity of the medians. When homogeneity holds, the combined estimator is the most efficient estimator. However, it becomes inconsistent when homogeneity fails. On the other hand, the proposed shrinkage estimator remains efficient. Its efficiency decreases as the equality of the survival medians is deviated, but is expected to be as good as or equal to the unrestricted estimator. Our simulation studies also indicate that the proposed shrinkage estimator is robust to moderate levels of censoring. We demonstrate application of these methods to estimating median time for trauma patients to receive red blood cells in the Prospective Observational Multi-center Major Trauma Transfusion (PROMMTT) study.

Nonparametric estimation of median survival times with applications to multi-site or multi-center studies

PubMed Central

Choi, Sangbum; Hong, Chuan; Zhu, Liang; Jeon, Sangchoon; Gardiner, Joseph C.

2018-01-01

We propose a nonparametric shrinkage estimator for the median survival times from several independent samples of right-censored data, which combines the samples and hypothesis information to improve the efficiency. We compare efficiency of the proposed shrinkage estimation procedure to unrestricted estimator and combined estimator through extensive simulation studies. Our results indicate that performance of these estimators depends on the strength of homogeneity of the medians. When homogeneity holds, the combined estimator is the most efficient estimator. However, it becomes inconsistent when homogeneity fails. On the other hand, the proposed shrinkage estimator remains efficient. Its efficiency decreases as the equality of the survival medians is deviated, but is expected to be as good as or equal to the unrestricted estimator. Our simulation studies also indicate that the proposed shrinkage estimator is robust to moderate levels of censoring. We demonstrate application of these methods to estimating median time for trauma patients to receive red blood cells in the Prospective Observational Multi-center Major Trauma Transfusion (PROMMTT) study. PMID:29772007

Neither fixed nor random: weighted least squares meta-analysis.

PubMed

Stanley, T D; Doucouliagos, Hristos

2015-06-15

This study challenges two core conventional meta-analysis methods: fixed effect and random effects. We show how and explain why an unrestricted weighted least squares estimator is superior to conventional random-effects meta-analysis when there is publication (or small-sample) bias and better than a fixed-effect weighted average if there is heterogeneity. Statistical theory and simulations of effect sizes, log odds ratios and regression coefficients demonstrate that this unrestricted weighted least squares estimator provides satisfactory estimates and confidence intervals that are comparable to random effects when there is no publication (or small-sample) bias and identical to fixed-effect meta-analysis when there is no heterogeneity. When there is publication selection bias, the unrestricted weighted least squares approach dominates random effects; when there is excess heterogeneity, it is clearly superior to fixed-effect meta-analysis. In practical applications, an unrestricted weighted least squares weighted average will often provide superior estimates to both conventional fixed and random effects. Copyright © 2015 John Wiley & Sons, Ltd.

The views and experiences of learning disability nurses concerning their advocacy education.

PubMed

Llewellyn, Penny; Northway, Ruth

2007-11-01

A mixed methods project [Llewellyn, P., 2005. An investigation into the advocacy role of the learning disability nurse. University of Glamorgan, unpublished PhD Thesis] investigated the advocacy role of learning disability nurses. This paper discusses the section concerned with nurses' advocacy education. Focus groups, interviews and a questionnaire survey enabled nurses from a wide range of grades, seniority and experience to explore their received education in advocacy and their educational requirements concerning their advocacy role. Findings revealed that nurses' received education in advocacy varied according to the syllabus under which they qualified, with those whose education was influenced by the 1979 Jay Report having the highest incidence of advocacy training. Many learning disability nurses who had received theoretical education did not feel confident to advocate for their clients. Many were also unsure of their ability to access independent advocacy services and when it was permissible to do this. Nurse informants expressed a need for ongoing support and training in advocacy relating to The Human Rights Act (1998) and The Disability Discrimination Act (1995); and also specifically in relation to advocacy for clients within their own work area. Most nurses had definite ideas regarding how and by whom their advocacy education and training should be provided.

Genetics Home Reference: homocystinuria

MedlinePlus

... reductase deficiency Orphanet: Homocystinuria without methylmalonic aciduria Screening, Technology, and Research in Genetics Virginia Department of Health (PDF) Patient Support and Advocacy Resources (6 links) Children Living with Inherited Metabolic Diseases (CLIMB) (UK) CLIMB: ...

Genetics Home Reference: isobutyryl-CoA dehydrogenase deficiency

MedlinePlus

... dehydrogenase deficiency Orphanet: Isobutyryl-CoA dehydrogenase deficiency Screening, Technology and Research in Genetics Patient Support and Advocacy Resources (3 links) Children's Cardiomyopathy Foundation CLIMB (Children Living with Inherited Metabolic ...

Consumer Empowerment in Dermatology

PubMed Central

Hoch, Heather E.; Busse, Kristine L.; Dellavalle, Robert P.

2009-01-01

Summary Health care consumers increasingly confront and collaborate with their medical providers. We describe consumer success in other medical fields and in dermatology, especially dermatologic disease advocacy and improving dermatologist-patient interactions. PMID:19254661

Why Advocacy and Policy Matter: Promoting Research and Innovation

Cancer.gov

Ellen V. Sigal, PhD, is Chairperson and Founder of Friends of Cancer Research (Friends), a think tank and advocacy organization based in Washington, DC. Friends drives collaboration among partners from every healthcare sector to power advances in science, policy and regulation that speed life-saving treatments to patients. During the past 20 years, Friends has been instrumental in the creation and implementation of policies ensuring patients receive the best treatments in the fastest and safest way possible. Dr. Sigal is Chair of the inaugural board of directors of the Reagan-Udall Foundation, a partnership designed to modernize medical product development, accelerate innovation and enhance product safety in collaboration with the U.S. Food and Drug Administration. She serves on the Board of the Foundation for the National Institutes of Health, where she chairs its Public Private Partnerships Committee. In 2001, Dr. Sigal was appointed to a six-year term on the Board of Governors of the Patient Centered Outcomes Research Institute (PCORI) as a representative of patients and health consumers. Additionally, in 2016 Dr. Sigal was named to Vice President Biden’s Cancer Moonshot Blue Ribbon Panel, to the Parker Institute for Immunotherapy Advisory Group and joined the inaugural board of advisors for the George Washington University’s Milken Institute of Public Health. She also holds leadership positions with a broad range of cancer advocacy, public policy organizations and academic health centers including: MD Anderson Cancer Center External Advisory Board, the Duke University Cancer Center Board of Overseers, and The Sidney Kimmel Comprehensive Cancer Center Advisory Council.

Patient-centered care in chronic disease management: a thematic analysis of the literature in family medicine.

PubMed

Hudon, Catherine; Fortin, Martin; Haggerty, Jeannie; Loignon, Christine; Lambert, Mireille; Poitras, Marie-Eve

2012-08-01

The objective was to provide a synthesis of the results of the research and discourse lines on main dimensions of patient-centered care in the context of chronic disease management in family medicine, building on Stewart et al.'s model. We developed search strategies for the Medline, Embase, and Cochrane databases, from 1980 to April 2009. All articles addressing patient-centered care in the context of chronic disease management in family medicine were included. A thematic analysis was performed using mixed codification, based on Stewart's model of patient-centered care. Thirty-two articles were included. Six major themes emerged: (1) starting from the patient's situation; (2) legitimizing the illness experience; (3) acknowledging the patient's expertise; (4) offering realistic hope; (5) developing an ongoing partnership; (6) providing advocacy for the patient in the health care system. The context of chronic disease management brings forward new dimensions of patient-centered care such as legitimizing the illness experience, acknowledging patient expertise, offering hope and providing advocacy. Chronic disease management calls for the adaptation of the family physician's role to patients' fluctuating needs. Literature also suggests the involvement of the family physician in care transitions as a component of patient-centered care. Crown Copyright © 2012. Published by Elsevier Ireland Ltd. All rights reserved.

Introductory Guide to Advocacy: Working To Improve Advocacy for School Health Education and Services.

ERIC Educational Resources Information Center

Reynolds, Sherri T.; Reilly, Linda A.; Ballin, Scott; Wooley, Susan Frelick

This guide was developed to help advocates who support school health programs, both as volunteers and staff. Four parts include: (1) "Introduction to Advocacy" (overview, American School Health Association and advocacy, lobbying laws and American School Health Association, and contract lobbyists); (2) "Advocacy Concepts"…

Self-Advocacy. Feature Issue.

ERIC Educational Resources Information Center

Hayden, Mary F., Ed.; Ward, Nancy, Ed.

1994-01-01

This feature issue newsletter looks at issues the self-advocacy movement is raising and the contributions it is making to the lives of people with developmental disabilities. Articles by self-advocates and advisors to self-advocacy organizations talk about their self-advocacy experiences, barriers to self-advocacy, and ways to support it. Primary…

78 FR 36303 - Open Meeting of the Taxpayer Advocacy Panel Joint Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2013-06-17

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Taxpayer Advocacy Panel... open meeting of the Taxpayer Advocacy Panel Joint Committee will be conducted. The Taxpayer Advocacy... open meeting of the Taxpayer Advocacy Panel Joint Committee will be held Wednesday, July 24, 2013 at 2...

77 FR 40410 - Open Meeting of the Taxpayer Advocacy Panel Joint Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2012-07-09

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Taxpayer Advocacy Panel... open meeting of the Taxpayer Advocacy Panel Joint Committee will be conducted. The Taxpayer Advocacy...) that an open meeting of the Taxpayer Advocacy Panel Joint Committee will be held Wednesday, August 22...

78 FR 48231 - Open Meeting of the Taxpayer Advocacy Panel Joint Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2013-08-07

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Taxpayer Advocacy Panel... open meeting of the Taxpayer Advocacy Panel Joint Committee will be conducted. The Taxpayer Advocacy...) that an open meeting of the Taxpayer Advocacy Panel Joint Committee will be held Wednesday, September...

Legislative advocacy is key to addressing teen driving deaths

PubMed Central

Gillan, J S

2006-01-01

The increased crash risk of young, novice drivers, especially in their teenage years, has been a growing concern at both the state and federal levels. Teenage drivers are involved in fatal crashes at more than double the rate of the rest of the population per 100 000 licensed drivers. The best way of stemming these losses is to enact laws adopting graduated licensure systems that restrict young, novice drivers to conditions that reduce crash risk exposure when they first operate motor vehicles and to educate the public on the need for this legislation. Legislated teenage driving restrictions involve night‐time vehicle driving restrictions, prohibitions on other teenage passengers, and the required presence of supervising adults. These restrictions are relaxed as teenage drivers successfully progress through initial and intermediate stages of graduated licensure before being granted unrestricted driver licenses. Unfortunately, many states have incomplete graduated licensing systems that need further legislative action to raise them to the desirable three‐stage system that has been shown repeatedly to produce the greatest safety benefits. These state efforts should be buttressed by federal legislation that has proved to be crucial in allied driver behavioral concerns. Because reducing crash risk involves other strategies, stringent enforcement of primary seat belt laws as well as improved motor vehicle crash avoidance capabilities and crashworthiness must accompany efforts to reduce young driver crash risk. PMID:16788112

Digital Scholarship and Open Access

ERIC Educational Resources Information Center

Losoff, Barbara; Pence, Harry E.

2010-01-01

Open access publications provide scholars with unrestricted access to the "conversation" that is the basis for the advancement of knowledge. The large number of open access journals, archives, and depositories already in existence demonstrates the technical and economic viability of providing unrestricted access to the literature that is the…

Patient perspectives on engagement in shared decision-making for asthma care.

PubMed

Tapp, Hazel; Derkowski, Diane; Calvert, Melissa; Welch, Madelyn; Spencer, Sara

2017-06-01

Engagement of patient and advocacy group stakeholders is increasingly considered essential to meaningful outcomes research. Patient-centred research benefits from partnership formation between patients, clinicians and research team members. Here, we describe the rationale for engaging patients on a research team and a case study of patient engagement on an asthma shared decision-making study. Here, we describe a case study of patient engagement in outcomes research and examine the variety of roles patients are engaged in and the associated impact on the study. Patients assisted the project at various levels and were integrated into the research team by (i) advising on study development; (ii) assisting with design and usability of study materials, including the toolkit, patient surveys and dissemination strategies; and (iii) advocacy via membership in external disease-specific organizations and participating in outcomes research conferences. Patients were engaged both individually and as members of a patient advisory board. Primary lessons learned were the importance of building a trusting partnership with patients through understanding perspectives, being aware of clearly explaining patients' roles, research methods and jargon, providing training, listening to patients' needs and understanding what the partnership means from a patient perspective. For the case study described, patient engagement directly influenced multiple aspects of the study, including study design, implementation, data analysis and dissemination through incorporation of the patients' and caregivers' input and concerns. © The Author 2016. Published by Oxford University Press.

Genetics Home Reference: Saethre-Chotzen syndrome

MedlinePlus

... Saethre-Chotzen syndrome Johns Hopkins Collaboration for Craniofacial Development and Disorders MalaCards: saethre-chotzen syndrome Orphanet: Saethre-Chotzen syndrome Seattle Children's Hospital and Regional Medical Center Patient Support and Advocacy Resources (4 ...

Immunosuppressants

MedlinePlus

... Menu Menu Search Home Prevention Kidney Disease Patients Organ Donation & Transplantation Professionals Events Advocacy Donate A to Z ... Exchange Programs Knowing Your Immunosuppressive (anti-rejection) Medications Organ and Tissue Donation The National Kidney Foundation (NKF) is the largest, ...

Genetics Home Reference: citrullinemia

MedlinePlus

... Type II MalaCards: citrullinemia, classic Orphanet: Citrullinemia Screening, Technology, and Research in Genetics Virginia Department of Health (PDF) Patient Support and Advocacy Resources (5 links) Children Living with Inherited Metabolic Diseases (CLIMB) (UK) National ...

Genetics Home Reference: methylmalonic acidemia with homocystinuria

MedlinePlus

... Orphanet: Methylmalonic acidemia with homocystinuria, type cblD Screening, Technology, and Research in Genetics (STAR-G) Patient Support and Advocacy Resources (3 links) Children Living with Inherited Metabolic Diseases (CLIMB) (UK) Organic ...

Home, Office of Public Advocacy, Department of Administration, State of

Science.gov Websites

Visiting Alaska State Employees State of Alaska Department of Administration Division of Office of Public Advocacy Alaska Department of Administration, Office of Public Advocacy Home Programs Sections Forms Vendor Support Search Office of Public Advocacy State of Alaska Administration > Office of Public Advocacy

Evaluating the Validity and Reliability of a Student Self-Advocacy Teacher Rating Scale

ERIC Educational Resources Information Center

Walick, Christopher M.

2017-01-01

Self-advocacy skills are critical to high school and post-secondary success. Unfortunately, students with disabilities often times struggle with self-advocacy. While there are effective, evidence-based programs to teach self-advocacy skills, there are few scales that directly measure self-advocacy. The current research study was conducted to…

Strengthening the American Academy of Pediatric Dentistry's Public Policy Advocate Network: Identifying Advocacy Efforts and Recommendations.

PubMed

Curtis, Benjamin D; Orynich, C Ashley; Casamassimo, Paul S; Seale, N Sue; Reggiardo, Paul; Wright, Robin; Litch, C Scott

2017-09-15

The purposes of this study were to collect information on involvement, training, and barriers to participation in advocacy efforts for Public Policy Advocates (PPAs) of the American Academy of Pediatric Dentistry (AAPD) and make recommendations to the AAPD. Preliminary data were collected from the PPAs during structured AAPD program meetings, conference calls, and individual interviews. Based on these data, a survey was created, piloted, and sent electronically to all PPAs. Data were analyzed and collated by frequencies. Responses from 38 PPAs (100 percent) revealed they were involved with state legislatures and state chapters of the AAPD and American Dental Association. Eighty-two percent of the PPAs requested additional public policy training and clearer communication channels within the network. PPAs are funding their own advocacy efforts, and the time and resources spent away from patient care is a financial barrier. The Public Policy Advocate network holds a broad policy skill set and voluntarily commits time and resource to advocate for the support of the pediatric dental patient at state and federal government levels. The American Academy of Pediatric Dentistry can strengthen the PPA's self-directed leadership role at state and federal levels through formalized training, restructuring of the network, and increased resources.

Advocacy, communication and social mobilisation for tuberculosis control in Pakistan: a qualitative case study.

PubMed

Haq, Z; Khan, W; Rizwan, S

2013-03-01

A national-level study in four districts, one each in all four provinces of Pakistan, a high tuberculosis (TB) burden country. To examine how advocacy, communication and social mobilisation (ACSM) campaigns by the National Tuberculosis Programme (NTP) in Pakistan engaged the populations of interest, to what extent they were successful in promoting services and desired behaviours, and how these campaigns could be improved. This was a qualitative case study comprising 13 focus groups and 36 individual interviews in four districts. All three levels of the ACSM programme, i.e., planners, implementers and beneficiaries, were included among the respondents. Improved political commitment, availability of funds, partnership with the private sector, visibility of the NTP and access to directly observed treatment (DOT) were achieved. Individual and social environmental issues of poor patients and marginalised communities were addressed to some extent, and could be improved in the future. Empathy and respect from physicians, and better service delivery of the DOTS-based programme were desired by the patients. The strategic advocacy ensured political and financial commitment; however, identification and targeting of vulnerable populations, and carrying out context-based social mobilisation and effective counselling are crucial to increase the use of DOT. Evaluations should be built-in from the beginning to increase the evidence on effectiveness of ACSM campaigns.

Genetics Home Reference: short/branched chain acyl-CoA dehydrogenase deficiency

MedlinePlus

... PDF) Orphanet: 2-methylbutyryl-CoA dehydrogenase deficiency Screening, Technology, and Research in Genetics Patient Support and Advocacy Resources (2 links) Children Living with Inherited Metabolic Diseases (CLIMB) Organic Acidemia ...

Genetics Home Reference: holocarboxylase synthetase deficiency

MedlinePlus

... holocarboxylase synthetase deficiency Orphanet: Multiple carboxylase deficiency Screening, Technology, and Research in Genetics Virginia Department of Health (PDF) Patient Support and Advocacy Resources (3 links) Children Living with Inherited Metabolic Diseases Organic Acidemia Association ...

Genetics Home Reference: 3-hydroxyacyl-CoA dehydrogenase deficiency

MedlinePlus

... short chain 3-hydroxylacyl-CoA dehydrogenase deficiency Screening, Technology and Research in Genetics (STAR-G) Patient Support and Advocacy Resources (3 links) Children Living with Inherited Metabolic Diseases (CLIMB) FOD (Fatty ...

Genetics Home Reference: beta-ketothiolase deficiency

MedlinePlus

... Beta Ketothiolase Deficiency Orphanet: Beta-ketothiolase deficiency Screening, Technology And Research in Genetics Virginia Department of Health (PDF) Patient Support and Advocacy Resources (2 links) Children Living with Inherited Metabolic Diseases Organic Acidemia Association ...

Genetics Home Reference: short-chain acyl-CoA dehydrogenase deficiency

MedlinePlus

... Orphanet: Short chain acyl-CoA dehydrogenase deficiency Screening, Technology and Research in Genetics Patient Support and Advocacy Resources (5 links) Children Living with Inherited Metabolic Disease (CLIMB) Children's Mitochondrial ...

Genetics Home Reference: isovaleric acidemia

MedlinePlus

... Consortium of Metabolic Programs Orphanet: Isovaleric acidemia Screening, Technology, and Research in Genetics Virginia Department of Health (PDF) Patient Support and Advocacy Resources (4 links) CLIMB (Children Living With Inherited Metabolic Diseases) (UK) National Organization ...

Genetics Home Reference: propionic acidemia

MedlinePlus

... Consortium of Metabolic Programs Orphanet: Propionic acidemia Screening, Technology, and Research in Genetics Virginia Department of Health (PDF) Patient Support and Advocacy Resources (6 links) CLIMB (Children Living With Inherited Metabolic Diseases) (UK) National Organization ...

Genetics Home Reference: mitochondrial trifunctional protein deficiency

MedlinePlus

... protein deficiency Orphanet: Mitochondrial trifunctional protein deficiency Screening, Technology, and Research in Genetics Virginia Department of Health (PDF) Patient Support and Advocacy Resources (4 links) Children Living with Inherited Metabolic Diseases (CLIMB) Children's Mitochondrial ...

Genetics Home Reference: dystonia 6

MedlinePlus

... neck, causing problems with speaking (dysarthria) and eating (dysphagia). Eyelid twitching (blepharospasm) may also occur. Involvement of ... dystonia, DYT6 type The Bachmann-Strauss Dystonia and Parkinson Foundation: What Is Dystonia? Patient Support and Advocacy ...

Genetics Home Reference: Hirschsprung disease

MedlinePlus

... MedlinePlus (5 links) Diagnostic Tests Drug Therapy Genetic Counseling Palliative Care Surgery and Rehabilitation Related Information How ... Patient Support and Advocacy Resources (4 links) Bowel Group for Kids International Foundation for Functional Gastrointestinal Disorders ...

Genetics Home Reference: GRACILE syndrome

MedlinePlus

... University of Utah Eccles Health Sciences Library: Iron Metabolism Patient Support and Advocacy Resources (1 link) Climb: National Information Centre for Metabolic Diseases Scientific Articles on PubMed (1 link) PubMed OMIM (1 link) ...

Genetics Home Reference: mannose-binding lectin deficiency

MedlinePlus

... Nobelprize.org: The Immune System - In More Detail Patient Support and Advocacy Resources (1 link) ... Sources for This Page Arora M, Munoz E, Tenner AJ. Identification of a site on mannan-binding lectin critical ...

9 CFR 95.5 - Untanned hides and skins; requirements for unrestricted entry.

Code of Federal Regulations, 2010 CFR

2010-01-01

... 9 Animals and Animal Products 1 2010-01-01 2010-01-01 false Untanned hides and skins; requirements for unrestricted entry. 95.5 Section 95.5 Animals and Animal Products ANIMAL AND PLANT HEALTH INSPECTION SERVICE, DEPARTMENT OF AGRICULTURE EXPORTATION AND IMPORTATION OF ANIMALS (INCLUDING POULTRY) AND...

9 CFR 95.9 - Glue stock; requirements for unrestricted entry.

Code of Federal Regulations, 2011 CFR

2011-01-01

... 9 Animals and Animal Products 1 2011-01-01 2011-01-01 false Glue stock; requirements for unrestricted entry. 95.9 Section 95.9 Animals and Animal Products ANIMAL AND PLANT HEALTH INSPECTION SERVICE, DEPARTMENT OF AGRICULTURE EXPORTATION AND IMPORTATION OF ANIMALS (INCLUDING POULTRY) AND ANIMAL PRODUCTS...

9 CFR 95.9 - Glue stock; requirements for unrestricted entry.

Code of Federal Regulations, 2010 CFR

2010-01-01

... 9 Animals and Animal Products 1 2010-01-01 2010-01-01 false Glue stock; requirements for unrestricted entry. 95.9 Section 95.9 Animals and Animal Products ANIMAL AND PLANT HEALTH INSPECTION SERVICE, DEPARTMENT OF AGRICULTURE EXPORTATION AND IMPORTATION OF ANIMALS (INCLUDING POULTRY) AND ANIMAL PRODUCTS...

The Financing of Mississippi Public Junior Colleges.

ERIC Educational Resources Information Center

Moody, George V.

Focusing primarily on current unrestricted and restricted funds, auxiliary funds, and plant funds, this report explains and provides historical and current data on the revenues and expenditures of the public junior colleges in Mississippi. The first section examines current unrestricted and restricted funds, indicating that the total revenues and…

10 CFR 20.1402 - Radiological criteria for unrestricted use.

Code of Federal Regulations, 2014 CFR

2014-01-01

... 10 Energy 1 2014-01-01 2014-01-01 false Radiological criteria for unrestricted use. 20.1402 Section 20.1402 Energy NUCLEAR REGULATORY COMMISSION STANDARDS FOR PROTECTION AGAINST RADIATION... exceed 25 mrem (0.25 mSv) per year, including that from groundwater sources of drinking water, and that...

10 CFR 20.1402 - Radiological criteria for unrestricted use.

Code of Federal Regulations, 2013 CFR

2013-01-01

... 10 Energy 1 2013-01-01 2013-01-01 false Radiological criteria for unrestricted use. 20.1402 Section 20.1402 Energy NUCLEAR REGULATORY COMMISSION STANDARDS FOR PROTECTION AGAINST RADIATION... exceed 25 mrem (0.25 mSv) per year, including that from groundwater sources of drinking water, and that...

10 CFR 20.1402 - Radiological criteria for unrestricted use.

Code of Federal Regulations, 2011 CFR

2011-01-01

... 10 Energy 1 2011-01-01 2011-01-01 false Radiological criteria for unrestricted use. 20.1402 Section 20.1402 Energy NUCLEAR REGULATORY COMMISSION STANDARDS FOR PROTECTION AGAINST RADIATION... exceed 25 mrem (0.25 mSv) per year, including that from groundwater sources of drinking water, and that...

10 CFR 20.1402 - Radiological criteria for unrestricted use.

Code of Federal Regulations, 2010 CFR

2010-01-01

... 10 Energy 1 2010-01-01 2010-01-01 false Radiological criteria for unrestricted use. 20.1402 Section 20.1402 Energy NUCLEAR REGULATORY COMMISSION STANDARDS FOR PROTECTION AGAINST RADIATION... exceed 25 mrem (0.25 mSv) per year, including that from groundwater sources of drinking water, and that...

10 CFR 20.1402 - Radiological criteria for unrestricted use.

Code of Federal Regulations, 2012 CFR

2012-01-01

... 10 Energy 1 2012-01-01 2012-01-01 false Radiological criteria for unrestricted use. 20.1402 Section 20.1402 Energy NUCLEAR REGULATORY COMMISSION STANDARDS FOR PROTECTION AGAINST RADIATION... exceed 25 mrem (0.25 mSv) per year, including that from groundwater sources of drinking water, and that...

48 CFR 19.502-2 - Total small business set-asides.

Code of Federal Regulations, 2010 CFR

2010-10-01

... purchases on an unrestricted basis, the contracting officer shall include in the contract file the reason for this unrestricted purchase. If the contracting officer receives only one acceptable offer from a... important, it is not the only factor to be considered in determining whether a reasonable expectation exists...

32 CFR 635.28 - Procedures for restricted/unrestricted reporting in sexual assault cases.

Code of Federal Regulations, 2012 CFR

2012-07-01

... 32 National Defense 4 2012-07-01 2011-07-01 true Procedures for restricted/unrestricted reporting in sexual assault cases. 635.28 Section 635.28 National Defense Department of Defense (Continued) DEPARTMENT OF THE ARMY (CONTINUED) LAW ENFORCEMENT AND CRIMINAL INVESTIGATIONS LAW ENFORCEMENT REPORTING...

32 CFR 635.28 - Procedures for restricted/unrestricted reporting in sexual assault cases.

Code of Federal Regulations, 2011 CFR

2011-07-01

... 32 National Defense 4 2011-07-01 2011-07-01 false Procedures for restricted/unrestricted reporting in sexual assault cases. 635.28 Section 635.28 National Defense Department of Defense (Continued) DEPARTMENT OF THE ARMY (CONTINUED) LAW ENFORCEMENT AND CRIMINAL INVESTIGATIONS LAW ENFORCEMENT REPORTING...

32 CFR 635.28 - Procedures for restricted/unrestricted reporting in sexual assault cases.

Code of Federal Regulations, 2010 CFR

2010-07-01

... 32 National Defense 4 2010-07-01 2010-07-01 true Procedures for restricted/unrestricted reporting in sexual assault cases. 635.28 Section 635.28 National Defense Department of Defense (Continued) DEPARTMENT OF THE ARMY (CONTINUED) LAW ENFORCEMENT AND CRIMINAL INVESTIGATIONS LAW ENFORCEMENT REPORTING...

32 CFR 635.28 - Procedures for restricted/unrestricted reporting in sexual assault cases.

Code of Federal Regulations, 2013 CFR

2013-07-01

... 32 National Defense 4 2013-07-01 2013-07-01 false Procedures for restricted/unrestricted reporting in sexual assault cases. 635.28 Section 635.28 National Defense Department of Defense (Continued) DEPARTMENT OF THE ARMY (CONTINUED) LAW ENFORCEMENT AND CRIMINAL INVESTIGATIONS LAW ENFORCEMENT REPORTING...

32 CFR 635.28 - Procedures for restricted/unrestricted reporting in sexual assault cases.

Code of Federal Regulations, 2014 CFR

2014-07-01

... 32 National Defense 4 2014-07-01 2013-07-01 true Procedures for restricted/unrestricted reporting in sexual assault cases. 635.28 Section 635.28 National Defense Department of Defense (Continued) DEPARTMENT OF THE ARMY (CONTINUED) LAW ENFORCEMENT AND CRIMINAL INVESTIGATIONS LAW ENFORCEMENT REPORTING...

Social Media Use in Pediatric Dermatology.

PubMed

Fogel, Alexander L; Teng, Joyce M C

2016-01-01

Social media is predicted to become increasingly important in dermatology because of its potential to serve as a platform for public health campaigns, aid in participant recruitment for clinical trials, increase public engagement in health care, and facilitate scientific discourse. No study of social media use in pediatric dermatology has been performed, so we analyzed the use of the seven leading social media platforms in pediatric dermatology, with a focus on patient advocacy groups, professional societies, research journals, and research institutions. We observed that 89% of patient advocacy groups, 100% of professional societies, 62.5% of research journals, and 0% of academic pediatric dermatology departments maintained one or more social media accounts. Our observations suggest that all stakeholder groups, and in particular members of the research community, have the potential to further their engagement, connections, and communications through social media. © 2016 Wiley Periodicals, Inc.

Advocacy: exploring the concept.

PubMed

Mardell, A

1996-10-01

The concept of the nurse as the patient's advocate is one that has become popular in the last fifteen years or so in both North America and the United Kingdom, having its basis in nursing theory. The UKCC first embraced the concept, stating in the Code of Professional Conduct that nurses must; 'act always in such a manner so as to promote and safeguard the interests and well being of patients and clients'. This is a laudable principle and one that nurses cannot dispute as there are many members of our society who are weak and vulnerable and may be unable to speak up for themselves. But are nurses always in a position to be an advocate for their patients? As the nature of nursing is so diverse then the nature of advocacy will be different in the multifarious settings in which nurses practise. Can theatre nurses ever be in a position to act as an advocate for a patient who is often anaesthetised? What precisely is advocacy and is the Concise Oxford Dictionary definition of 'one who pleads for another' appropriate in the nursing context? Then there is the position of nurses in the healthcare organisation in which they practise. In advocating for their patients, nurses may find they are pleading a case for a patient, or a group of patients, that could bring the nurse into conflict with their medical colleagues or with the management of the organisation by whom they are employed. Additionally, they may not posses the skills and knowledge to advocate effectively under such circumstances. Nursing is littered with the casualties of such conflicts over the years, the most publicised of whom, in the UK, was probably Graham Pink who lost his job as a charge nurse after drawing public attention to what he considered to be an unacceptable standard of care in the hospital in which he worked.

Public health and media advocacy.

PubMed

Dorfman, Lori; Krasnow, Ingrid Daffner

2014-01-01

Media advocacy blends communications, science, politics, and advocacy to advance public health goals. In this article, we explain how media advocacy supports the social justice grounding of public health while addressing public health's "wicked problems" in the context of American politics. We outline media advocacy's theoretical foundations in agenda setting and framing and describe its practical application, from the layers of strategy to storytelling, which can illuminate public health solutions for journalists, policy makers, and the general public. Finally, we describe the challenges in evaluating media advocacy campaigns.

Patient-Centered Drug Approval: The Role of Patient Advocacy in the Drug Approval Process.

PubMed

Mattingly, T Joseph; Simoni-Wastila, Linda

2017-10-01

Recent approval of eteplirsen for Duchenne muscular dystrophy (DMD), a rare disease with few treatment alternatives, has reignited the debate over the U.S. drug approval process. The evolution of legal and regulatory restrictions to the marketing and sale of pharmaceuticals has spanned more than a century, and throughout this history, patient advocacy has played a significant role. Scientific evidence from clinical trials serves as the foundation for drug approval, but the patient voice has become increasingly influential. Although the gold standard for establishing safety and efficacy through randomized controlled trials has been in place for more than 50 years, it poses several limitations for rare disorders where patient recruitment for traditional clinical trials is a major barrier. Organized efforts by patient advocacy groups to help patients with rare diseases access investigational therapy have had a legislative and regulatory effect. After approval by the FDA, patient access to therapy may still be limited by cost. A managed care organization (MCO) with the fiduciary responsibility of managing the health of a population must weigh coverage decisions for costly therapies with questionable effectiveness against alternatives within the constraint of a finite budget. Even when the FDA deems a drug safe and effective, an MCO may determine that the drug should only be made available at a tier level where out-of-pocket costs are still too high for many patients. This limitation of availability may be due to cost, other treatment alternatives, or outcomes from existing clinical evidence. However, if the MCO makes a costly new treatment for a rare disease readily available, it may temporarily satisfy a small contingency at the cost of all of its members. This article examines the risks and benefits of patient-centered drug approval and the potential economic effect of patient-centered drug approval on population health. There is no funding to disclose. Mattingly reports advisory board fees from Summit Therapeutics and an educational grant from ALK, outside of this article. Simoni-Wastila has nothing to disclose. Mattingly took the lead in conceptualizing this Viewpoint article and writing the manuscript, along with Simoni-Wastila. Both authors contributed equally to manucript revision.

Advocacy for Art Education: Beyond Tee-Shirts and Bumper Stickers

ERIC Educational Resources Information Center

Bobick, Bryna; DiCindio, Carissa

2012-01-01

Advocacy is not new to art education. Over the years, Goldfarb (1979), Hodsoll (1985), and Erickson and Young (1996) have written about the importance of arts advocacy, but the concept of advocacy has evolved with the times. For example, in the 1970s, arts advocacy was described as a "movement" and brought together art educators,…

Advocacy and mass education in plastic surgery: Efforts and outcomes

PubMed Central

Panse, Nikhil Shrikrishna

2017-01-01

Background: Awareness of plastic surgery is lacking. Be it reconstructive surgery, or aesthetic surgery, public education and awareness regarding the spectrum is the need of the hour. Materials and Methods: We undertook a string of activities for patient awareness and education for burn prevention, occupational hand injuries prevention, skin banking awareness and various other conditions relevant to us as plastic surgeons. Use of social media helped us for increasing the reach of our projects. Observation and Results: Some of the projects we started, we are still pursuing with sincerity, and some never really picked up. A wide range and spectrum of activities were undertaken, and we would like to think that we have made some impact towards advocacy of plastic surgery; however, the measurable impact of these initiatives is questionable. Conclusion: Collective efforts for promotion of the speciality using innovative methods, use of celebrities for awareness and social media amongst other things must be undertaken to make a sustained and demonstrable impact towards advocacy of plastic surgery. PMID:28615817

National Center for Assisted Living

MedlinePlus

... Resources Publications Social Media Facts and Figures Communities Finance Residents Workforce State Data Advocacy AHCA/NCAL Advocacy ... Media Resources Publications Social Media Facts & Figures Communities Finance Residents Workforce State Data Advocacy AHCA/NCAL Advocacy ...

PubMed

Cruz, Carina Rebello; Finger, Ingrid

2013-07-01

This study investigates the phonological acquisition of Brazilian Portuguese (BP) by a group of 24 bimodal bilingual hearing children, who have unrestricted access to Brazilian Sign Language (Libras), and a group of 6 deaf children, who use cochlear implants (CI), with restricted or unrestricted access to Libras. The children's phonological system of BP was assessed through the Naming Task (Part A) of the ABFW - Children Language Test (ANDRADE et al. 2004). The results revealed that the hearing children and the deaf child who use CI, all with full access to Libras, showed expected (normal) phonological acquisition considering their age groups. We consider that the early acquisition and unrestricted access to Libras may have determined these children's performance in the oral tests.

The unrestricted local properties: application in nanoelectronics and for predicting radicals reactivity.

PubMed

Dral, Pavlo O

2014-03-01

The local electron affinity (EA(L)) and the local ionization energy (IE(L)) are successfully used for predicting properties of closed-shell species for drug design and for nanoelectronics. Here the respective unrestricted Hartree-Fock variants of EA(L) and IE(L), i.e., the unrestricted local electron affinity (UHF-EA(L)) and ionization energy (UHF-IE(L)), have been shown to be useful for predicting properties of open-shell species. UHF-EA(L) and UHF-IE(L) have been applied for explaining unique electronic properties of an exemplary nanomaterial carbon peapod. It is also demonstrated that UHF-EA(L) is useful for predicting and better understanding reactivity of radicals related to alkanes activation.

Cross-cultural adaptation and validation of the Protective Nursing Advocacy Scale for Brazilian nurses 1

PubMed Central

Tomaschewski-Barlem, Jamila Geri; Lunardi, Valéria Lerch; Barlem, Edison Luiz Devos; da Silveira, Rosemary Silva; Dalmolin, Graziele de Lima; Ramos, Aline Marcelino

2015-01-01

Abstract Objective: to adapt culturally and validate the Protective Nursing Advocacy Scale for Brazilian nurses. Method: methodological study carried out with 153 nurses from two hospitals in the South region of Brazil, one public and the other philanthropic. The cross-cultural adaptation of the Protective Nursing Advocacy Scale was performed according to international standards, and its validation was carried out for use in the Brazilian context, by means of factor analysis and Cronbach's alpha as measure of internal consistency. Results: by means of evaluation by a committee of experts and application of pre-test, face validity and content validity of the instrument were considered satisfactory. From the factor analysis, five constructs were identified: negative implications of the advocacy practice, advocacy actions, facilitators of the advocacy practice, perceptions that favor practice advocacy and barriers to advocacy practice. The instrument showed satisfactory internal consistency, with Cronbach's alpha values ranging from 0.70 to 0.87. Conclusion: it was concluded that the Protective Nursing Advocacy Scale - Brazilian version, is a valid and reliable instrument for use in the evaluation of beliefs and actions of health advocacy, performed by Brazilian nurses in their professional practice environment. PMID:26444169

Genetics Home Reference: glutaric acidemia type I

MedlinePlus

... Acidemia I Orphanet: Glutaryl-CoA dehydrogenase deficiency Screening, Technology and Research in Genetics Virginia Department of Health (PDF) Patient Support and Advocacy Resources (3 links) Children Living with Inherited Metabolic Diseases (CLIMB) National Organization ...

National Nursing Shortage Reform and Patient Advocacy Act

THOMAS, 113th Congress

Sen. Boxer, Barbara [D-CA

2013-04-16

Senate - 04/16/2013 Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (All Actions) Tracker: This bill has the status IntroducedHere are the steps for Status of Legislation:

National Nursing Shortage Reform and Patient Advocacy Act

THOMAS, 112th Congress

Sen. Boxer, Barbara [D-CA

2011-05-12

Senate - 05/12/2011 Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (All Actions) Tracker: This bill has the status IntroducedHere are the steps for Status of Legislation:

National Nursing Shortage Reform and Patient Advocacy Act

THOMAS, 111th Congress

Sen. Boxer, Barbara [D-CA

2009-05-13

Senate - 05/13/2009 Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (All Actions) Tracker: This bill has the status IntroducedHere are the steps for Status of Legislation:

Genetics Home Reference: intervertebral disc disease

MedlinePlus

... periodic or chronic pain in the back or neck. Pain is often worse when sitting, bending, twisting, or ... Version: Low Back Pain Merck Manual Consumer Version: Neck Pain Patient Support and Advocacy Resources (3 links) American ...

IPPF focuses on advocacy. Advocacy for reproductive health: worldwide.

PubMed

Puri, S; Ketting, E

1996-01-01

The International Planned Parenthood Federation has been advocating human rights since its establishment in 1952. Since the adoption of its global strategic plan, Vision 2000, it has dealt with advocacy in a more systematic manner. Advocacy aims to gain broader support for a cause. In family planning and reproductive health, advocacy is important in counteracting conservative opposition movements. Its most effective tool is high-quality information and services for meeting people's needs. Its target groups are women's groups, youth organizations, parliamentarians, media representatives, and religious leaders. Information, education, and communication (IEC) campaigns differ from advocacy, because the latter is deliberately persuasive and campaign-oriented. An Advocacy Working Group was convened by IPPF and an Advocacy Guide was produced in 1995. Advocacy is needed for the promotion of sexual and reproductive health in the face of opposition from traditional and cultural forces represented by small, vocal, well-financed and organized groups. In 1984 they succeeded in halting funding for IPPF by the United States. This made IPPF resolute in strategic planning and setting goals as contained in Vision 2000. The goals include advocacy for family planning, the prevention of unsafe abortion, women's empowerment, the involvement of youth, the responsibility of men for family life, and the improvement of the status of the female child. The IPPF's 1985 Central Council discussed new initiatives and an Issues Manual was published. The 1989 Members' Assembly held a seminar on critical issues in advocating family planning. A further 1993 resolution urged support for advocacy initiatives. A Public Response Guide was published in 1991 and Language Guidelines were also produced for correct family planning terminology. In addition, an Interregional Training Workshop was held in London in 1995 on the use of the Advocacy Guide. Recommendations were also submitted by participants for advocacy programs and for future training.

American Medical Society for Sports Medicine

MedlinePlus

... Research Grants Virtual Journal Club Resources Research Awards Research Survey Requests ADVOCACY ADVOCACY Practice Tools Issue Briefs State ... Research Grants Virtual Journal Club Resources Research Awards Research Survey Requests Advocacy Advocacy Practice Tools Issue Briefs State ...

Impact of the increased adoption of prenatal cfDNA screening on non-profit patient advocacy organizations in the United States.

PubMed

Meredith, Stephanie; Kaposy, Christopher; Miller, Victoria J; Allyse, Megan; Chandrasekharan, Subhashini; Michie, Marsha

2016-08-01

The 'Stakeholder Perspectives on Noninvasive Prenatal Genetic Screening' Symposium was held in conjunction with the 2015 annual meeting of the International Society for Prenatal Diagnosis. During the day-long meeting, a panel of patient advocacy group (PAG) representatives discussed concerns and challenges raised by prenatal cell-free DNA (cfDNA) screening, which has resulted in larger demands upon PAGs from concerned patients receiving prenatal cfDNA screening results. Prominent concerns included confusion about the accuracy of cfDNA screening and a lack of patient education resources about genetic conditions included in cfDNA screens. Some of the challenges faced by PAGs included funding limitations, lack of consistently implemented standards of care and oversight, diverse perspectives among PAGs and questions about neutrality, and lack of access to training and genetic counselors. PAG representatives also put forward suggestions for addressing these challenges, including improving educational and PAG funding and increasing collaboration between PAGs and the medical community. © 2016 John Wiley & Sons, Ltd. © 2016 John Wiley & Sons, Ltd.

Funding agencies and disease organizations: resources and recommendations to facilitate ALS clinical research.

PubMed

Chad, David A; Bidichandani, Sanjay; Bruijn, Lucie; Capra, J Donald; Dickie, Brian; Ferguson, John; Figlewicz, Denise; Forsythe, Melissa; Kaufmann, Petra; Kirshner, Annette; Monti, William

2013-05-01

Ten groups presented their perspectives on facilitating clinical research in ALS including four federal agencies, four disease organizations, one foundation and one advocacy group. The federal agencies (National Institute of Neurological Disorders and Stroke, National Institute of Environmental Health Sciences, Office of Rare Diseases Research, Department of Defense) encourage fostering a team approach between pre-clinical and clinical research investigators, coordinating with patient groups in the early phases of clinical studies, enhancing private and public partnerships, and investigating the interplay between genetic susceptibility and environmental exposure. The disease organizations (Muscular Dystrophy Association, ALS Association, ALS Society of Canada, and the Motor Neurone Disease Association UK) support fellowship training programs to develop ALS clinician scientists, and encourage work on the epidemiology of ALS, on genetic and epigenetic mechanisms that are relevant to ALS pathogenesis, on developing ALS registries and biobanks, and building bridges of collaboration among study groups. The Foundation supports innovative projects, including stem-cell research, and Patient Advocacy is committed to supporting excellence in ALS research and patient care, and believes strongly in enhancing communication between patients and members of the research community.

19 CFR 12.96 - Imports unrestricted under the Act.

Code of Federal Regulations, 2010 CFR

2010-04-01

... OF THE TREASURY SPECIAL CLASSES OF MERCHANDISE Switchblade Knives § 12.96 Imports unrestricted under the Act. (a) Common and special purpose knives. Imported knives with a blade style designed for a... in condition as entered the imported knife is not a switchblade knife as defined in § 12.95(a)(1...

32 CFR 105.13 - Case management for Unrestricted Reports of sexual assault.

Code of Federal Regulations, 2014 CFR

2014-07-01

... 32 National Defense 1 2014-07-01 2014-07-01 false Case management for Unrestricted Reports of sexual assault. 105.13 Section 105.13 National Defense Department of Defense OFFICE OF THE SECRETARY OF DEFENSE PERSONNEL, MILITARY AND CIVILIAN SEXUAL ASSAULT PREVENTION AND RESPONSE PROGRAM PROCEDURES § 105...

32 CFR 105.13 - Case management for Unrestricted Reports of sexual assault.

Code of Federal Regulations, 2013 CFR

2013-07-01

... 32 National Defense 1 2013-07-01 2013-07-01 false Case management for Unrestricted Reports of sexual assault. 105.13 Section 105.13 National Defense Department of Defense OFFICE OF THE SECRETARY OF DEFENSE PERSONNEL, MILITARY AND CIVILIAN SEXUAL ASSAULT PREVENTION AND RESPONSE PROGRAM PROCEDURES § 105...

Young deafblind adults in action: becoming self-determined change agents through advocacy.

PubMed

Bruce, Susan M; Parker, Amy T

2012-01-01

Six young deafblind adults took a 1-week course on civic engagement and advocacy, which provided the focus for a participatory action research study with a collective case study design. They selected advocacy topics, were briefed on these policy issues, and were paired with experienced mentors for meetings with legislators in Washington, DC. Eight themes were identified from constant comparative and in vivo analysis of classroom discussion notes, interviews, and journals: (a) defining advocacy and advocate, (b) rights and equality, (c) expectations, (d) role of education in change, (e) deafblind expertise, (f) characteristics of effective change agents, (g) advocacy is teamwork, (h) future advocacy. In the classroom, the participants learned about policy issues, communication considerations, and leadership, then applied this knowledge in the legislative arena. Through the advocacy process, they learned to apply their personal strengths as advocates and experienced the importance of teamwork in advocacy.

Mendelian randomization of blood lipids for coronary heart disease

PubMed Central

Holmes, Michael V.; Asselbergs, Folkert W.; Palmer, Tom M.; Drenos, Fotios; Lanktree, Matthew B.; Nelson, Christopher P.; Dale, Caroline E.; Padmanabhan, Sandosh; Finan, Chris; Swerdlow, Daniel I.; Tragante, Vinicius; van Iperen, Erik P.A.; Sivapalaratnam, Suthesh; Shah, Sonia; Elbers, Clara C.; Shah, Tina; Engmann, Jorgen; Giambartolomei, Claudia; White, Jon; Zabaneh, Delilah; Sofat, Reecha; McLachlan, Stela; Doevendans, Pieter A.; Balmforth, Anthony J.; Hall, Alistair S.; North, Kari E.; Almoguera, Berta; Hoogeveen, Ron C.; Cushman, Mary; Fornage, Myriam; Patel, Sanjay R.; Redline, Susan; Siscovick, David S.; Tsai, Michael Y.; Karczewski, Konrad J.; Hofker, Marten H.; Verschuren, W. Monique; Bots, Michiel L.; van der Schouw, Yvonne T.; Melander, Olle; Dominiczak, Anna F.; Morris, Richard; Ben-Shlomo, Yoav; Price, Jackie; Kumari, Meena; Baumert, Jens; Peters, Annette; Thorand, Barbara; Koenig, Wolfgang; Gaunt, Tom R.; Humphries, Steve E.; Clarke, Robert; Watkins, Hugh; Farrall, Martin; Wilson, James G.; Rich, Stephen S.; de Bakker, Paul I.W.; Lange, Leslie A.; Davey Smith, George; Reiner, Alex P.; Talmud, Philippa J.; Kivimäki, Mika; Lawlor, Debbie A.; Dudbridge, Frank; Samani, Nilesh J.; Keating, Brendan J.; Hingorani, Aroon D.; Casas, Juan P.

2015-01-01

Aims To investigate the causal role of high-density lipoprotein cholesterol (HDL-C) and triglycerides in coronary heart disease (CHD) using multiple instrumental variables for Mendelian randomization. Methods and results We developed weighted allele scores based on single nucleotide polymorphisms (SNPs) with established associations with HDL-C, triglycerides, and low-density lipoprotein cholesterol (LDL-C). For each trait, we constructed two scores. The first was unrestricted, including all independent SNPs associated with the lipid trait identified from a prior meta-analysis (threshold P < 2 × 10−6); and the second a restricted score, filtered to remove any SNPs also associated with either of the other two lipid traits at P ≤ 0.01. Mendelian randomization meta-analyses were conducted in 17 studies including 62,199 participants and 12,099 CHD events. Both the unrestricted and restricted allele scores for LDL-C (42 and 19 SNPs, respectively) associated with CHD. For HDL-C, the unrestricted allele score (48 SNPs) was associated with CHD (OR: 0.53; 95% CI: 0.40, 0.70), per 1 mmol/L higher HDL-C, but neither the restricted allele score (19 SNPs; OR: 0.91; 95% CI: 0.42, 1.98) nor the unrestricted HDL-C allele score adjusted for triglycerides, LDL-C, or statin use (OR: 0.81; 95% CI: 0.44, 1.46) showed a robust association. For triglycerides, the unrestricted allele score (67 SNPs) and the restricted allele score (27 SNPs) were both associated with CHD (OR: 1.62; 95% CI: 1.24, 2.11 and 1.61; 95% CI: 1.00, 2.59, respectively) per 1-log unit increment. However, the unrestricted triglyceride score adjusted for HDL-C, LDL-C, and statin use gave an OR for CHD of 1.01 (95% CI: 0.59, 1.75). Conclusion The genetic findings support a causal effect of triglycerides on CHD risk, but a causal role for HDL-C, though possible, remains less certain. PMID:24474739

Mendelian randomization of blood lipids for coronary heart disease.

PubMed

Holmes, Michael V; Asselbergs, Folkert W; Palmer, Tom M; Drenos, Fotios; Lanktree, Matthew B; Nelson, Christopher P; Dale, Caroline E; Padmanabhan, Sandosh; Finan, Chris; Swerdlow, Daniel I; Tragante, Vinicius; van Iperen, Erik P A; Sivapalaratnam, Suthesh; Shah, Sonia; Elbers, Clara C; Shah, Tina; Engmann, Jorgen; Giambartolomei, Claudia; White, Jon; Zabaneh, Delilah; Sofat, Reecha; McLachlan, Stela; Doevendans, Pieter A; Balmforth, Anthony J; Hall, Alistair S; North, Kari E; Almoguera, Berta; Hoogeveen, Ron C; Cushman, Mary; Fornage, Myriam; Patel, Sanjay R; Redline, Susan; Siscovick, David S; Tsai, Michael Y; Karczewski, Konrad J; Hofker, Marten H; Verschuren, W Monique; Bots, Michiel L; van der Schouw, Yvonne T; Melander, Olle; Dominiczak, Anna F; Morris, Richard; Ben-Shlomo, Yoav; Price, Jackie; Kumari, Meena; Baumert, Jens; Peters, Annette; Thorand, Barbara; Koenig, Wolfgang; Gaunt, Tom R; Humphries, Steve E; Clarke, Robert; Watkins, Hugh; Farrall, Martin; Wilson, James G; Rich, Stephen S; de Bakker, Paul I W; Lange, Leslie A; Davey Smith, George; Reiner, Alex P; Talmud, Philippa J; Kivimäki, Mika; Lawlor, Debbie A; Dudbridge, Frank; Samani, Nilesh J; Keating, Brendan J; Hingorani, Aroon D; Casas, Juan P

2015-03-01

To investigate the causal role of high-density lipoprotein cholesterol (HDL-C) and triglycerides in coronary heart disease (CHD) using multiple instrumental variables for Mendelian randomization. We developed weighted allele scores based on single nucleotide polymorphisms (SNPs) with established associations with HDL-C, triglycerides, and low-density lipoprotein cholesterol (LDL-C). For each trait, we constructed two scores. The first was unrestricted, including all independent SNPs associated with the lipid trait identified from a prior meta-analysis (threshold P < 2 × 10(-6)); and the second a restricted score, filtered to remove any SNPs also associated with either of the other two lipid traits at P ≤ 0.01. Mendelian randomization meta-analyses were conducted in 17 studies including 62,199 participants and 12,099 CHD events. Both the unrestricted and restricted allele scores for LDL-C (42 and 19 SNPs, respectively) associated with CHD. For HDL-C, the unrestricted allele score (48 SNPs) was associated with CHD (OR: 0.53; 95% CI: 0.40, 0.70), per 1 mmol/L higher HDL-C, but neither the restricted allele score (19 SNPs; OR: 0.91; 95% CI: 0.42, 1.98) nor the unrestricted HDL-C allele score adjusted for triglycerides, LDL-C, or statin use (OR: 0.81; 95% CI: 0.44, 1.46) showed a robust association. For triglycerides, the unrestricted allele score (67 SNPs) and the restricted allele score (27 SNPs) were both associated with CHD (OR: 1.62; 95% CI: 1.24, 2.11 and 1.61; 95% CI: 1.00, 2.59, respectively) per 1-log unit increment. However, the unrestricted triglyceride score adjusted for HDL-C, LDL-C, and statin use gave an OR for CHD of 1.01 (95% CI: 0.59, 1.75). The genetic findings support a causal effect of triglycerides on CHD risk, but a causal role for HDL-C, though possible, remains less certain. © The Author 2014. Published by Oxford University Press on behalf of the European Society of Cardiology.

Rethinking the therapeutic misconception: social justice, patient advocacy, and cancer clinical trial recruitment in the US safety net.

PubMed

Burke, Nancy J

2014-09-20

Approximately 20% of adult cancer patients are eligible to participate in a clinical trial, but only 2.5-9% do so. Accrual is even less for minority and medically underserved populations. As a result, critical life-saving treatments and quality of life services developed from research studies may not address their needs. This study questions the utility of the bioethical concern with therapeutic misconception (TM), a misconception that occurs when research subjects fail to distinguish between clinical research and ordinary treatment, and therefore attribute therapeutic intent to research procedures in the safety net setting. This paper provides ethnographic insight into the ways in which research is discussed and related to standard treatment. In the course of two years of ethnographic fieldwork in a safety net hospital, I conducted clinic observations (n=150 clinic days) and in-depth in-person qualitative interviews with patients (n=37) and providers (n=15). I used standard qualitative methods to organize and code resulting fieldnote and interview data. Findings suggest that TM is limited in relevance for the interdisciplinary context of cancer clinical trial recruitment in the safety net setting. Ethnographic data show the value of the discussions that happen prior to the informed consent, those that introduce the idea of participation in research. These preliminary discussions are elemental especially when recruiting underserved and vulnerable patients for clinical trial participation who are often unfamiliar with medical research and how it relates to medical care. Data also highlight the multiple actors involved in research discussions and the ethics of social justice and patient advocacy they mobilize, suggesting that class, inequality, and dependency influence the forms of ethical engagements in public hospital settings. On the ground ethics of social justice and patient advocacy are more relevant than TM as guiding ethical principles in the context of ongoing cancer disparities and efforts to diversify clinical trial participation.

Living related versus deceased donor liver transplantation for maple syrup urine disease.

PubMed

Feier, Flavia; Schwartz, Ida Vanessa D; Benkert, Abigail R; Seda Neto, Joao; Miura, Irene; Chapchap, Paulo; da Fonseca, Eduardo Antunes; Vieira, Sandra; Zanotelli, Maria Lúcia; Pinto e Vairo, Filippo; Camelo, Jose Simon; Margutti, Ana Vitoria Barban; Mazariegos, George V; Puffenberger, Erik G; Strauss, Kevin A

2016-03-01

Maple syrup urine disease (MSUD) is an inherited disorder of branched chain ketoacid (BCKA) oxidation associated with episodic and chronic brain disease. Transplantation of liver from an unrelated deceased donor restores 9-13% whole-body BCKA oxidation capacity and stabilizes MSUD. Recent reports document encouraging short-term outcomes for MSUD patients who received a liver segment from mutation heterozygous living related donors (LRDT). To investigate effects of living related versus deceased unrelated grafts, we studied four Brazilian MSUD patients treated with LRDT who were followed for a mean 19 ± 12 postoperative months, and compared metabolic and clinical outcomes to 37 classical MSUD patients treated with deceased donor transplant. Patient and graft survival for LRDT were 100%. Three of 4 MSUD livers were successfully domino transplanted into non-MSUD subjects. Following LRDT, all subjects resumed a protein-unrestricted diet as mean plasma leucine decreased from 224 ± 306 μM to 143 ± 44 μM and allo-isoleucine decreased 91%. We observed no episodes of hyperleucinemia during 80 aggregate postoperative patient-months. Mean plasma leucine:isoleucine:valine concentration ratios were ~2:1:4 after deceased donor transplant compared to ~1:1:1.5 following LRDT, resulting in differences of predicted cerebral amino acid uptake. Mutant heterozygous liver segments effectively maintain steady-state BCAA and BCKA homeostasis on an unrestricted diet and during most catabolic states, but might have different metabolic effects than grafts from unrelated deceased donors. Neither living related nor deceased donor transplant affords complete protection from metabolic intoxication, but both strategies represent viable alternatives to nutritional management. Copyright © 2016 Elsevier Inc. All rights reserved.

Basis set and electron correlation effects on the polarizability and second hyperpolarizability of model open-shell π-conjugated systems

NASA Astrophysics Data System (ADS)

Champagne, Benoı̂t; Botek, Edith; Nakano, Masayoshi; Nitta, Tomoshige; Yamaguchi, Kizashi

2005-03-01

The basis set and electron correlation effects on the static polarizability (α) and second hyperpolarizability (γ) are investigated ab initio for two model open-shell π-conjugated systems, the C5H7 radical and the C6H8 radical cation in their doublet state. Basis set investigations evidence that the linear and nonlinear responses of the radical cation necessitate the use of a less extended basis set than its neutral analog. Indeed, double-zeta-type basis sets supplemented by a set of d polarization functions but no diffuse functions already provide accurate (hyper)polarizabilities for C6H8 whereas diffuse functions are compulsory for C5H7, in particular, p diffuse functions. In addition to the 6-31G*+pd basis set, basis sets resulting from removing not necessary diffuse functions from the augmented correlation consistent polarized valence double zeta basis set have been shown to provide (hyper)polarizability values of similar quality as more extended basis sets such as augmented correlation consistent polarized valence triple zeta and doubly augmented correlation consistent polarized valence double zeta. Using the selected atomic basis sets, the (hyper)polarizabilities of these two model compounds are calculated at different levels of approximation in order to assess the impact of including electron correlation. As a function of the method of calculation antiparallel and parallel variations have been demonstrated for α and γ of the two model compounds, respectively. For the polarizability, the unrestricted Hartree-Fock and unrestricted second-order Møller-Plesset methods bracket the reference value obtained at the unrestricted coupled cluster singles and doubles with a perturbative inclusion of the triples level whereas the projected unrestricted second-order Møller-Plesset results are in much closer agreement with the unrestricted coupled cluster singles and doubles with a perturbative inclusion of the triples values than the projected unrestricted Hartree-Fock results. Moreover, the differences between the restricted open-shell Hartree-Fock and restricted open-shell second-order Møller-Plesset methods are small. In what concerns the second hyperpolarizability, the unrestricted Hartree-Fock and unrestricted second-order Møller-Plesset values remain of similar quality while using spin-projected schemes fails for the charged system but performs nicely for the neutral one. The restricted open-shell schemes, and especially the restricted open-shell second-order Møller-Plesset method, provide for both compounds γ values close to the results obtained at the unrestricted coupled cluster level including singles and doubles with a perturbative inclusion of the triples. Thus, to obtain well-converged α and γ values at low-order electron correlation levels, the removal of spin contamination is a necessary but not a sufficient condition. Density-functional theory calculations of α and γ have also been carried out using several exchange-correlation functionals. Those employing hybrid exchange-correlation functionals have been shown to reproduce fairly well the reference coupled cluster polarizability and second hyperpolarizability values. In addition, inclusion of Hartree-Fock exchange is of major importance for determining accurate polarizability whereas for the second hyperpolarizability the gradient corrections are large.

Genetics Home Reference: 3-methylcrotonyl-CoA carboxylase deficiency

MedlinePlus

... Targets Orphanet: 3-methylcrotonyl-CoA carboxylase deficiency Screening, Technology, and Research in Genetics Virginia Department of Health (PDF) Patient Support and Advocacy Resources (3 links) Children Living with Inherited Metabolic Diseases (CLIMB) (UK) Organic ...

Genetics Home Reference: 3-hydroxy-3-methylglutaryl-CoA lyase deficiency

MedlinePlus

... Targets Orphanet: 3-hydroxy-3-methylglutaric aciduria Screening, Technology, and Research in Genetics Virginia Department of Health (PDF) Patient Support and Advocacy Resources (3 links) Children Living with Inherited Metabolic Diseases (CLIMB) (UK) FOD ( ...

Genetics Home Reference: familial osteochondritis dissecans

MedlinePlus

... Familial osteochondritis dissecans Seattle Children's TeensHealth from Nemours: Knee Injuries University of Connecticut Health Center Patient Support and Advocacy Resources (1 link) American College of Rheumatology: Osteoarthritis ClinicalTrials.gov (1 link) ClinicalTrials.gov Scientific Articles ...

Shwachman-Diamond Syndrome Foundation

MedlinePlus

... is a national, not for profit, patient advocacy organization. Our goals are to advocate and fund research towards improved treatment and a cure. We provide educational services and emotional support to SDS families. We sponsor a bi-annual family conference which ...

76 FR 78931 - Food and Drug Administration Rare Disease Patient Advocacy Day; Notice of Meeting

Federal Register 2010, 2011, 2012, 2013, 2014

2011-12-20

... Administration, HHS. ACTION: Notice. The Food and Drug Administration's (FDA) Office of Orphan Products... educate the rare disease community on the FDA regulatory processes. This educational meeting will consist...

Oxalosis and Hyperoxaluria Foundation

MedlinePlus

... Donate Get Involved Advocacy Be A Volunteer Fundraising Social Media Grants & Funding Home Learn Organ Donation & Transplants Overview Patient Registry Research Symptoms Treatment News OHF Stories: The Ouimet Family – Part 11 Webinar – Dicerna Research Highlights from 12th ...

Going "social" to access experimental and potentially life-saving treatment: an assessment of the policy and online patient advocacy environment for expanded access.

PubMed

Mackey, Tim K; Schoenfeld, Virginia J

2016-02-02

Social media is fundamentally altering how we access health information and make decisions about medical treatment, including for terminally ill patients. This specifically includes the growing phenomenon of patients who use online petitions and social media campaigns in an attempt to gain access to experimental drugs through expanded access pathways. Importantly, controversy surrounding expanded access and "compassionate use" involves several disparate stakeholders, including patients, manufacturers, policymakers, and regulatory agencies-all with competing interests and priorities, leading to confusion, frustration, and ultimately advocacy. In order to explore this issue in detail, this correspondence article first conducts a literature review to describe how the expanded access policy and regulatory environment in the United States has evolved over time and how it currently impacts access to experimental drugs. We then conducted structured web searches to identify patient use of online petitions and social media campaigns aimed at compelling access to experimental drugs. This was carried out in order to characterize the types of communication strategies utilized, the diseases and drugs subject to expanded access petitions, and the prevalent themes associated with this form of "digital" patient advocacy. We find that patients and their families experience mixed results, but still gravitate towards the use of online campaigns out of desperation, lack of reliable information about treatment access options, and in direct response to limitations of the current fragmented structure of expanded access regulation and policy currently in place. In response, we discuss potential policy reforms to improve expanded access processes, including advocating greater transparency for expanded access programs, exploring use of targeted economic incentives for manufacturers, and developing systems to facilitate patient information about existing treatment options. This includes leveraging recent legislative attention to reform expanded access through the CURE Act Provisions contained in the proposed U.S. 21st Century Cures Act. While expanded access may not be the best option for the majority of individuals, terminally ill patients and their families nevertheless deserve better processes, policies, and availability to potentially life-changing information, before they decide to pursue an online campaign in the desperate hope of gaining access to experimental drugs.

Chimeric Antigen Receptors that Recognize Mesothelin for Cancer Immunotherapy | NCI Technology Transfer Center | TTC

Cancer.gov

Researchers at the NCI have developed chimeric antigen receptors (CARs) with a high affinity for mesothelin to be used as an immunotherapy to treat pancreatic cancer, ovarian cancer, and mesothelioma. Cells that express CARs, most notably T cells, are highly reactive against their specific tumor antigen in an MHC-unrestricted manner to generate an immune response that promotes robust tumor cell elimination when infused into cancer patients.

9 CFR 95.7 - Wool, hair, and bristles; requirements for unrestricted entry.

Code of Federal Regulations, 2010 CFR

2010-01-01

... 9 Animals and Animal Products 1 2010-01-01 2010-01-01 false Wool, hair, and bristles; requirements for unrestricted entry. 95.7 Section 95.7 Animals and Animal Products ANIMAL AND PLANT HEALTH INSPECTION SERVICE, DEPARTMENT OF AGRICULTURE EXPORTATION AND IMPORTATION OF ANIMALS (INCLUDING POULTRY) AND ANIMAL PRODUCTS SANITARY CONTROL OF ANIMAL...

Identification and Small Sample Estimation of Thurstone's Unrestricted Model for Paired Comparisons Data

ERIC Educational Resources Information Center

Maydeu-Olivares, Alberto; Hernandez, Adolfo

2007-01-01

The interpretation of a Thurstonian model for paired comparisons where the utilities' covariance matrix is unrestricted proved to be difficult due to the comparative nature of the data. We show that under a suitable constraint the utilities' correlation matrix can be estimated, yielding a readily interpretable solution. This set of identification…

9 CFR 95.7 - Wool, hair, and bristles; requirements for unrestricted entry.

Code of Federal Regulations, 2012 CFR

2012-01-01

... 9 Animals and Animal Products 1 2012-01-01 2012-01-01 false Wool, hair, and bristles; requirements... ENTRY INTO THE UNITED STATES § 95.7 Wool, hair, and bristles; requirements for unrestricted entry. Wool, hair, or bristles derived from ruminants and/or swine which do not meet the conditions or requirements...

9 CFR 95.7 - Wool, hair, and bristles; requirements for unrestricted entry.

Code of Federal Regulations, 2013 CFR

2013-01-01

... 9 Animals and Animal Products 1 2013-01-01 2013-01-01 false Wool, hair, and bristles; requirements... ENTRY INTO THE UNITED STATES § 95.7 Wool, hair, and bristles; requirements for unrestricted entry. Wool, hair, or bristles derived from ruminants and/or swine which do not meet the conditions or requirements...

9 CFR 95.7 - Wool, hair, and bristles; requirements for unrestricted entry.

Code of Federal Regulations, 2011 CFR

2011-01-01

... 9 Animals and Animal Products 1 2011-01-01 2011-01-01 false Wool, hair, and bristles; requirements... ENTRY INTO THE UNITED STATES § 95.7 Wool, hair, and bristles; requirements for unrestricted entry. Wool, hair, or bristles derived from ruminants and/or swine which do not meet the conditions or requirements...

Protected Chloroethyl and Chloropropyl Amines as Conformationally Unrestricted Annulating Reagents.

PubMed

Shi, Qing; Meehan, Mariah C; Galella, Michael; Park, Hyunsoo; Khandelwal, Purnima; Hynes, John; Dhar, T G Murali; Marcoux, David

2018-01-19

The purpose of this letter is to document the use of protected chloroethyl and chloropropyl amines as conformationally unrestricted ambiphilic reagents that undergo annulation reactions with Michael acceptors. This reaction is wide in scope and utilizes reagents that are commercially available, inexpensive, and stable. Furthermore, this reaction is easy to execute and proceeds rapidly.

CSER 99-002: CSER for unrestricted moderation of sludge material with two-boat operations in gloveboxes HC-21A and HC21-C

DOE Office of Scientific and Technical Information (OSTI.GOV)

LAN, J.S.

1999-04-29

This Criticality Safety Evaluation Report was prepared by Fluor Daniel Northwest under contract to BWHC. This document establishes the criticality safety parameters for unrestricted moderation of Sludge material with two-boat operations in gloveboxes HC-21A and HC-21C.

[Self-Advocacy.

ERIC Educational Resources Information Center

Carr, Theresa, Ed.

1994-01-01

This theme issue presents personal perspectives and approaches to self-advocacy from individuals who are deaf-blind. Individual articles are: (1) "Self-Advocacy: Attaining Personal Stature" by Michelle J. Smithdas; (2) "The American Association of the Deaf-Blind: A National Consumer Advocacy Organization" by Jeffrey S. Bohrman;…

Media advocacy: lessons from community experiences.

PubMed

Jernigan, D H; Wright, P A

1996-01-01

Media advocacy is the strategic use of mass media and community organizing as a resource for advancing a social or public policy initiative. Across the United States, communities are using media advocacy to promote healthier public policies and environments. The U.S. Center for Substance Abuse Prevention commissioned numerous case studies of media advocacy on alcohol and tobacco issues in a diverse array of communities, including efforts in African-American and Latino communities or using computer-based electronic communication systems. The paper describes these efforts briefly, and summarizes lessons learned, including: media advocacy can lead to larger victories when used as a complement to community organizing in the context of a larger strategic vision for policy change; like policy advocacy, media advocacy is best done in the context of clear long-term goals; conscious framing, guiding the choice of spokespeople, visuals, and messages, can alter media coverage and public debate of health policies; advocates need to respect the media but also remember that they have power in relation to the media; and media advocacy is often controversial and not suited to every situation. The case studies show that media advocacy is a potent tool for public health workers, making an important contribution to campaigns to promote healthier public policies.

Genetics Home Reference: RAPADILINO syndrome

MedlinePlus

... 3 links) Health Topic: Bone Diseases Health Topic: Cleft Lip and Palate Health Topic: Hand Injuries and Disorders Genetic and ... Anomaly MalaCards: rapadilino syndrome March of Dimes: Cleft Lip and Cleft Palate Orphanet: RAPADILINO syndrome Patient Support and Advocacy Resources ( ...

Barrier Methods of Birth Control: Spermicide, Condom, Sponge, Diaphragm, and Cervical Cap

MedlinePlus

... Education & Events Advocacy For Patients About ACOG Barrier Methods of Birth Control: Spermicide, Condom, Sponge, Diaphragm, and ... Cervical Cap FAQ022, March 2018 PDF Format Barrier Methods of Birth Control: Spermicide, Condom, Sponge, Diaphragm, and ...

Genetics Home Reference: very long-chain acyl-CoA dehydrogenase deficiency

MedlinePlus

... Very long chain acyl-CoA dehydrogenase deficiency Screening, Technology, and Research in Genetics Virginia Department of Health (PDF) Patient Support and Advocacy Resources (4 links) Children's Mitochondrial Disease Network (UK) FOD (Fatty Oxidation Disorders) ...

Genetics Home Reference: long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency

MedlinePlus

... Long chain 3-hydroxyacyl-CoA dehydrogenase deficiency Screening, Technology, and Research in Genetics Virginia Department of Health (PDF) Patient Support and Advocacy Resources (4 links) Children Living with Inherited Metabolic Diseases (CLIMB) Children's Mitochondrial ...

Genetics Home Reference: hereditary sensory and autonomic neuropathy type V

MedlinePlus

... links) National Institute of Neurological Disorders and Stroke: Peripheral Neuropathy National Institutes of Health Rare Diseases Clinical Research ... neuropathy type 5 University of Chicago Center for Peripheral Neuropathy Patient Support and Advocacy Resources (1 link) The ...

Approaches to Advocacy for Health Educators.

ERIC Educational Resources Information Center

Mahoney, Beverly Saxton, Ed.; Brown, Kelli McCormack, Ed.

1999-01-01

This monograph provides a collection of articles on health educators' approaches to advocacy: "The Role of Health Education Advocacy in Removing Disparities in Health Care" (John P. Allegrante, Donald E. Morisky, and Behjat A. Sharif); "The Role of Health Education Associations in Advocacy" (M. Elaine Auld and Eleanor…

76 FR 56877 - Proposed Collection; Comment Request for Form 13013, and 13013-D

Federal Register 2010, 2011, 2012, 2013, 2014

2011-09-14

... Form 13013, Taxpayer Advocacy Panel (TAP) Membership Application, and Form 13013-D, Taxpayer Advocacy... Panel (TAP) Membership Application; Taxpayer Advocacy Panel Tax Check Waiver. OMB Number: 1545-1788. Form Numbers: 13013, 13013-D. Abstract: Form 13013, Taxpayer Advocacy Panel (TAP) Membership...

Patient Advocacy Organizations, Industry Funding, and Conflicts of Interest.

PubMed

Rose, Susannah L; Highland, Janelle; Karafa, Matthew T; Joffe, Steven

2017-03-01

Patient advocacy organizations (PAOs) are influential health care stakeholders that provide direct counseling and education for patients, engage in policy advocacy, and shape research agendas. Many PAOs report having financial relationships with for-profit industry, yet little is known about the nature of these relationships. To describe the nature of industry funding and partnerships between PAOs and for-profit companies in the United States. A survey was conducted from September 1, 2013, to June 30, 2014, of a nationally representative random sample of 439 PAO leaders, representing 5.6% of 7865 PAOs identified in the United States. Survey questions addressed the nature of their activities, their financial relationships with industry, and the perceived effectiveness of their conflict of interest policies. Amount and sources of revenue as well as organizational experiences with and policies regarding financial conflict of interest. Of the 439 surveys mailed to PAO leaders, 289 (65.8%) were returned with at least 80% of the questions answered. The PAOs varied widely in terms of size, funding, activities, and disease focus. The median total revenue among responding organizations was $299 140 (interquartile range, $70 000-$1 200 000). A total of 165 of 245 PAOs (67.3%) reported receiving industry funding, with 19 of 160 PAOs (11.9%) receiving more than half of their funding from industry. Among the subset of PAOs that received industry funding, the median amount was $50 000 (interquartile range, $15 000-$200 000); the median proportion of industry support derived from the pharmaceutical, device, and/or biotechnology sectors was 45% (interquartile range, 0%-100%). A total of 220 of 269 respondents (81.8%) indicated that conflicts of interest are very or moderately relevant to PAOs, and 94 of 171 (55.0%) believed that their organizations' conflict of interest policies were very good. A total of 22 of 285 PAO leaders (7.7%) perceived pressure to conform their positions to the interests of corporate donors. Patient advocacy organizations engage in wide-ranging health activities. Although most PAOs receive modest funding from industry, a minority receive substantial industry support, raising added concerns about independence. Many respondents report a need to improve their conflict of interest policies to help maintain public trust.

Development of measures to evaluate youth advocacy for obesity prevention.

PubMed

Millstein, Rachel A; Woodruff, Susan I; Linton, Leslie S; Edwards, Christine C; Sallis, James F

2016-07-26

Youth advocacy has been successfully used in substance use prevention but is a novel strategy in obesity prevention. As a precondition for building an evidence base for youth advocacy for obesity prevention, the present study aimed to develop and evaluate measures of youth advocacy mediator, process, and outcome variables. The Youth Engagement and Action for Health (YEAH!) program (San Diego County, CA) engaged youth and adult group leaders in advocacy for school and neighborhood improvements to nutrition and physical activity environments. Based on a model of youth advocacy, scales were developed to assess mediators, intervention processes, and proximal outcomes of youth advocacy for obesity prevention. Youth (baseline n = 136) and adult group leaders (baseline n = 47) completed surveys before and after advocacy projects. With baseline data, we created youth advocacy and adult leadership subscales using confirmatory factor analysis (CFA) and described their psychometric properties. Youth came from 21 groups, were ages 9-22, and most were female. Most youth were non-White, and the largest ethnic group was Hispanic/Latino (35.6%). The proposed factor structure held for most (14/20 youth and 1/2 adult) subscales. Modifications were necessary for 6 of the originally proposed 20 youth and 1 of the 2 adult multi-item subscales, which involved splitting larger subscales into two components and dropping low-performing items. Internally consistent scales to assess mediators, intervention processes, and proximal outcomes of youth advocacy for obesity prevention were developed. The resulting scales can be used in future studies to evaluate youth advocacy programs.

Effects of brief daily periods of unrestricted vision during early monocular form deprivation on development of visual area 2.

PubMed

Zhang, Bin; Tao, Xiaofeng; Wensveen, Janice M; Harwerth, Ronald S; Smith, Earl L; Chino, Yuzo M

2011-09-14

Providing brief daily periods of unrestricted vision during early monocular form deprivation reduces the depth of amblyopia. To gain insights into the neural basis of the beneficial effects of this treatment, the binocular and monocular response properties of neurons were quantitatively analyzed in visual area 2 (V2) of form-deprived macaque monkeys. Beginning at 3 weeks of age, infant monkeys were deprived of clear vision in one eye for 12 hours every day until 21 weeks of age. They received daily periods of unrestricted vision for 0, 1, 2, or 4 hours during the form-deprivation period. After behavioral testing to measure the depth of the resulting amblyopia, microelectrode-recording experiments were conducted in V2. The ocular dominance imbalance away from the affected eye was reduced in the experimental monkeys and was generally proportional to the reduction in the depth of amblyopia in individual monkeys. There were no interocular differences in the spatial properties of V2 neurons in any subject group. However, the binocular disparity sensitivity of V2 neurons was significantly higher and binocular suppression was lower in monkeys that had unrestricted vision. The decrease in ocular dominance imbalance in V2 was the neuronal change most closely associated with the observed reduction in the depth of amblyopia. The results suggest that the degree to which extrastriate neurons can maintain functional connections with the deprived eye (i.e., reducing undersampling for the affected eye) is the most significant factor associated with the beneficial effects of brief periods of unrestricted vision.

Effects of Brief Daily Periods of Unrestricted Vision during Early Monocular Form Deprivation on Development of Visual Area 2

PubMed Central

Zhang, Bin; Tao, Xiaofeng; Wensveen, Janice M.; Harwerth, Ronald S.; Smith, Earl L.

2011-01-01

Purpose. Providing brief daily periods of unrestricted vision during early monocular form deprivation reduces the depth of amblyopia. To gain insights into the neural basis of the beneficial effects of this treatment, the binocular and monocular response properties of neurons were quantitatively analyzed in visual area 2 (V2) of form-deprived macaque monkeys. Methods. Beginning at 3 weeks of age, infant monkeys were deprived of clear vision in one eye for 12 hours every day until 21 weeks of age. They received daily periods of unrestricted vision for 0, 1, 2, or 4 hours during the form-deprivation period. After behavioral testing to measure the depth of the resulting amblyopia, microelectrode-recording experiments were conducted in V2. Results. The ocular dominance imbalance away from the affected eye was reduced in the experimental monkeys and was generally proportional to the reduction in the depth of amblyopia in individual monkeys. There were no interocular differences in the spatial properties of V2 neurons in any subject group. However, the binocular disparity sensitivity of V2 neurons was significantly higher and binocular suppression was lower in monkeys that had unrestricted vision. Conclusions. The decrease in ocular dominance imbalance in V2 was the neuronal change most closely associated with the observed reduction in the depth of amblyopia. The results suggest that the degree to which extrastriate neurons can maintain functional connections with the deprived eye (i.e., reducing undersampling for the affected eye) is the most significant factor associated with the beneficial effects of brief periods of unrestricted vision. PMID:21849427

Brief Daily Periods of Unrestricted Vision Can Prevent Form-Deprivation Amblyopia

PubMed Central

Wensveen, Janice M.; Harwerth, Ronald S.; Hung, Li-Fang; Ramamirtham, Ramkumar; Kee, Chea-su; Smith, Earl L.

2006-01-01

PURPOSE To characterize how the mechanisms that produce unilateral form-deprivation amblyopia integrate the effects of normal and abnormal vision over time, the effects of brief daily periods of unrestricted vision on the spatial vision losses produced by monocular form deprivation were investigated in infant monkeys. METHODS Beginning at 3 weeks of age, unilateral form deprivation was initiated in 18 infant monkeys by securing a diffuser spectacle lens in front of one eye and a clear plano lens in front of the fellow eye. During the treatment period (18 weeks), three infants wore the diffusers continuously. For the other experimental infants, the diffusers were removed daily and replaced with clear, zero-powered lenses for 1 (n = 5), 2 (n = 6), or 4 (n = 4) hours. Four infants reared with binocular zero-powered lenses and four normally reared monkeys provided control data. RESULTS The degree of amblyopia varied significantly with the daily duration of unrestricted vision. Continuous form deprivation caused severe amblyopia. However, 1 hour of unrestricted vision reduced the degree of amblyopia by 65%, 2 hours reduced the deficits by 90%, and 4 hours preserved near-normal spatial contrast sensitivity. CONCLUSIONS The severely amblyogenic effects of form deprivation in infant primates are substantially reduced by relatively short daily periods of unrestricted vision. The manner in which the mechanisms responsible for amblyopia integrate the effects of normal and abnormal vision over time promotes normal visual development and has important implications for the management of human infants with conditions that potentially cause amblyopia. PMID:16723458

Self-Advocacy, Feature Issue of IMPACT.

ERIC Educational Resources Information Center

Hayden, Mary F., Ed.; Shoultz, Bonnie, Ed.

1991-01-01

This newsletter issue gives people with disabilities the opportunity to educate others about self-advocacy. Twelve of its 17 articles are by individuals with disabilities who are self-advocates, or by other representatives of self-advocacy organizations. It includes information on self-advocacy strategies and examples of its impact on lives.…

Examining School Counselors' Commitments to Social Justice Advocacy

ERIC Educational Resources Information Center

Feldwisch, Rachel P.

2016-01-01

Many school counselors endorse using social justice advocacy to close achievement gaps. In this study, school counselors from a single state scored in the moderate to high range on the Social Issues Advocacy Scale. Results showed alignment between school counselors' self-endorsement of social justice advocacy and scores on the Advocacy…

75 FR 40033 - Proposed Collection; Comment Request for Taxpayer Advocacy Panel (TAP) Tax Check Waiver

Federal Register 2010, 2011, 2012, 2013, 2014

2010-07-13

... Taxpayer Advocacy Panel (TAP) Tax Check Waiver AGENCY: Internal Revenue Service (IRS), Treasury. ACTION... comments concerning Taxpayer Advocacy Panel (TAP) Tax Check Waiver. DATES: Written comments should [email protected] . SUPPLEMENTARY INFORMATION: Title: Taxpayer Advocacy Panel (TAP) Tax Check Waiver. OMB...

The Nature, Correlates, and Conditions of Parental Advocacy in Special Education

ERIC Educational Resources Information Center

Burke, Meghan M.; Hodapp, Robert M.

2016-01-01

Although parents often advocate for the best educational services for their children with disabilities, few studies examine parents' advocacy activities; identify parent-school relationship, parent, and student correlates of advocacy; or describe the conditions of advocacy. Responding to a national, web-based survey, 1087 parents of students with…

10 CFR 50.83 - Release of part of a power reactor facility or site for unrestricted use.

Code of Federal Regulations, 2011 CFR

2011-01-01

... 10 Energy 1 2011-01-01 2011-01-01 false Release of part of a power reactor facility or site for... of a power reactor facility or site for unrestricted use. (a) Prior written NRC approval is required... release. Nuclear power reactor licensees seeking NRC approval shall— (1) Evaluate the effect of releasing...

10 CFR 50.83 - Release of part of a power reactor facility or site for unrestricted use.

Code of Federal Regulations, 2010 CFR

2010-01-01

... 10 Energy 1 2010-01-01 2010-01-01 false Release of part of a power reactor facility or site for... of a power reactor facility or site for unrestricted use. (a) Prior written NRC approval is required... release. Nuclear power reactor licensees seeking NRC approval shall— (1) Evaluate the effect of releasing...

What and how do students learn in an interprofessional student-run clinic? An educational framework for team-based care

PubMed Central

Lie, Désirée A.; Forest, Christopher P.; Walsh, Anne; Banzali, Yvonne; Lohenry, Kevin

2016-01-01

Background The student-run clinic (SRC) has the potential to address interprofessional learning among health professions students. Purpose To derive a framework for understanding student learning during team-based care provided in an interprofessional SRC serving underserved patients. Methods The authors recruited students for a focus group study by purposive sampling and snowballing. They constructed two sets of semi-structured questions for uniprofessional and multiprofessional groups. Sessions were audiotaped, and transcripts were independently coded and adjudicated. Major themes about learning content and processes were extracted. Grounded theory was followed after data synthesis and interpretation to establish a framework for interprofessional learning. Results Thirty-six students from four professions (medicine, physician assistant, occupational therapy, and pharmacy) participated in eight uniprofessional groups; 14 students participated in three multiprofessional groups (N = 50). Theme saturation was achieved. Six common themes about learning content from uniprofessional groups were role recognition, team-based care appreciation, patient experience, advocacy-/systems-based models, personal skills, and career choices. Occupational therapy students expressed self-advocacy, and medical students expressed humility and self-discovery. Synthesis of themes from all groups suggests a learning continuum that begins with the team huddle and continues with shared patient care and social interactions. Opportunity to observe and interact with other professions in action is key to the learning process. Discussion Interprofessional SRC participation promotes learning ‘with, from, and about’ each other. Participation challenges misconceptions and sensitizes students to patient experiences, health systems, advocacy, and social responsibility. Learning involves interprofessional interactions in the patient encounter, reinforced by formal and informal communications. Participation is associated with interest in serving the underserved and in primary care careers. The authors proposed a framework for interprofessional learning with implications for optimal learning environments to promote team-based care. Future research is suggested to identify core faculty functions and best settings to advance and enhance student preparation for future collaborative team practice. PMID:27499364

What and how do students learn in an interprofessional student-run clinic? An educational framework for team-based care.

PubMed

Lie, Désirée A; Forest, Christopher P; Walsh, Anne; Banzali, Yvonne; Lohenry, Kevin

2016-01-01

Background The student-run clinic (SRC) has the potential to address interprofessional learning among health professions students. Purpose To derive a framework for understanding student learning during team-based care provided in an interprofessional SRC serving underserved patients. Methods The authors recruited students for a focus group study by purposive sampling and snowballing. They constructed two sets of semi-structured questions for uniprofessional and multiprofessional groups. Sessions were audiotaped, and transcripts were independently coded and adjudicated. Major themes about learning content and processes were extracted. Grounded theory was followed after data synthesis and interpretation to establish a framework for interprofessional learning. Results Thirty-six students from four professions (medicine, physician assistant, occupational therapy, and pharmacy) participated in eight uniprofessional groups; 14 students participated in three multiprofessional groups (N = 50). Theme saturation was achieved. Six common themes about learning content from uniprofessional groups were role recognition, team-based care appreciation, patient experience, advocacy-/systems-based models, personal skills, and career choices. Occupational therapy students expressed self-advocacy, and medical students expressed humility and self-discovery. Synthesis of themes from all groups suggests a learning continuum that begins with the team huddle and continues with shared patient care and social interactions. Opportunity to observe and interact with other professions in action is key to the learning process. Discussion Interprofessional SRC participation promotes learning 'with, from, and about' each other. Participation challenges misconceptions and sensitizes students to patient experiences, health systems, advocacy, and social responsibility. Learning involves interprofessional interactions in the patient encounter, reinforced by formal and informal communications. Participation is associated with interest in serving the underserved and in primary care careers. The authors proposed a framework for interprofessional learning with implications for optimal learning environments to promote team-based care. Future research is suggested to identify core faculty functions and best settings to advance and enhance student preparation for future collaborative team practice.

What and how do students learn in an interprofessional student-run clinic? An educational framework for team-based care.

PubMed

Lie, Désirée A; Forest, Christopher P; Walsh, Anne; Banzali, Yvonne; Lohenry, Kevin

2016-01-01

The student-run clinic (SRC) has the potential to address interprofessional learning among health professions students. To derive a framework for understanding student learning during team-based care provided in an interprofessional SRC serving underserved patients. The authors recruited students for a focus group study by purposive sampling and snowballing. They constructed two sets of semi-structured questions for uniprofessional and multiprofessional groups. Sessions were audiotaped, and transcripts were independently coded and adjudicated. Major themes about learning content and processes were extracted. Grounded theory was followed after data synthesis and interpretation to establish a framework for interprofessional learning. Thirty-six students from four professions (medicine, physician assistant, occupational therapy, and pharmacy) participated in eight uniprofessional groups; 14 students participated in three multiprofessional groups (N = 50). Theme saturation was achieved. Six common themes about learning content from uniprofessional groups were role recognition, team-based care appreciation, patient experience, advocacy-/systems-based models, personal skills, and career choices. Occupational therapy students expressed self-advocacy, and medical students expressed humility and self-discovery. Synthesis of themes from all groups suggests a learning continuum that begins with the team huddle and continues with shared patient care and social interactions. Opportunity to observe and interact with other professions in action is key to the learning process. Interprofessional SRC participation promotes learning 'with, from, and about' each other. Participation challenges misconceptions and sensitizes students to patient experiences, health systems, advocacy, and social responsibility. Learning involves interprofessional interactions in the patient encounter, reinforced by formal and informal communications. Participation is associated with interest in serving the underserved and in primary care careers. The authors proposed a framework for interprofessional learning with implications for optimal learning environments to promote team-based care. Future research is suggested to identify core faculty functions and best settings to advance and enhance student preparation for future collaborative team practice.

Genetics Home Reference: popliteal pterygium syndrome

MedlinePlus

... Additional Information & Resources MedlinePlus (1 link) Health Topic: Cleft Lip and Palate Genetic and Rare Diseases Information Center (1 link) ... InfoSearch: Popliteal pterygium syndrome March of Dimes: Cleft Lip and Cleft Palate Orphanet: Popliteal pterygium syndrome Patient Support and Advocacy ...

New Study Shows 59 Percent of Americans Will Develop Kidney Disease in Their Lifetime

MedlinePlus

... Patients Organ Donation & Transplantation Professionals Events Advocacy Donate NEW STUDY SHOWS 59 PERCENT OF AMERICANS WILL DEVELOP ... Urine Screening for All Americans Over Age 60 New York, NY (August 1, 2013) – Nearly six of ...

Anatomy of Advocacy: A Case Study of the White House Petition

ERIC Educational Resources Information Center

Burns, Elizabeth; Kimmel, Sue; Dickinson, Gail

2016-01-01

Little research has been conducted examining advocacy efforts in the school library field despite the fact that program advocate is a prominent role for school librarians. One element of advocacy is the engagement in political initiatives that may affect school library programs. This case study investigates the effectiveness of one advocacy effort…

Aging Action: A Course in Senior Advocacy in Kansas.

ERIC Educational Resources Information Center

Kansas State Advisory Council on Aging, Topeka.

Skills useful in advocacy of senior citizens' needs are discussed in this manual. The topics included are: (1) the meaning of advocacy; (2) assertiveness training for aging-action; (3) identifying issues; (4) choosing issues; (5) developing a plan of action; (6) organizing; (7) legislative advocacy; (8) criteria to evaluate potential legislative…

Advocacy as a Practice of Critical Teacher Leadership

ERIC Educational Resources Information Center

Bradley-Levine, Jill

2018-01-01

Teacher advocacy has been examined as a practice of activism external to the school and as a practice of educational leadership. However, researchers have not merged these ideas by framing advocacy as a practice of leadership that takes place within the classroom and across the school. This article illustrates how, through advocacy on behalf of…

Development and Assessment of the Social Issues Advocacy Scale

ERIC Educational Resources Information Center

Nilsson, Johanna E.; Marszalek, Jacob M.; Linnemeyer, Rachel M.; Bahner, Angela D.; Misialek, Leah Hanson

2011-01-01

This article describes the development and the initial psychometric evaluation of the Social Issues Advocacy Scale in two studies. In the first study, an exploratory factor analysis (n = 278) revealed a four-factor scale, accounting for 71.4% of the variance, measuring different aspects of social issue advocacy: Political and Social Advocacy,…

Advocacy and Age: Issues, Experiences, Strategies.

ERIC Educational Resources Information Center

Kerschner, Paul A., Ed.

This monograph seeks to bring understanding to one component of the advocacy field, that of advocacy and the aged, by overviewing this component through a series of articles. (Advocacy is an activity by which changes can be effected in a power structure to improve a subgroup's situation.) There are four parts to the document: part 1, entitled…

The African cancer advocacy consortium: shaping the path for advocacy in Africa

PubMed Central

2013-01-01

Although there is significant evidence of a cancer epidemic in Africa, there is limited awareness about cancer in most African countries. By partnering with international organizations and institutions such as the University of Florida and the Prostate Net, the African Organisation for Research and Training in Cancer (AORTIC) is committed to improving cancer advocacy in Africa. This paper presents some of the recent efforts on cancer advocacy in Africa, including the results of a SWOT analysis conducted for the cancer advocacy workshop and the guidelines developed by cancer advocates on best practices for cancer advocacy in Africa. One of the outcomes of these efforts is the African Cancer Advocates Consortium (ACAC) founded by cancer advocates in Africa to, “Make Cancer a Top Priority in Africa”. While we have started the work to strengthen cancer advocacy in Africa, we still have a long way to go. Our goal of making cancer a priority in Africa can mainly be achieved by: (1) increasing the manpower for cancer advocacy through education and training; and (2) strengthening the network of cancer advocates across the continent. PMID:23902674

A randomized clinical trial of mindfulness-based cognitive therapy versus unrestricted services for health anxiety (hypochondriasis).

PubMed

McManus, Freda; Surawy, Christina; Muse, Kate; Vazquez-Montes, Maria; Williams, J Mark G

2012-10-01

The efficacy and acceptability of existing psychological interventions for health anxiety (hypochondriasis) are limited. In the current study, the authors aimed to assess the impact of mindfulness-based cognitive therapy (MBCT) on health anxiety by comparing the impact of MBCT in addition to usual services (unrestricted services) with unrestricted services (US) alone. The 74 participants were randomized to either MBCT in addition to US (n = 36) or US alone (n = 38). Participants were assessed prior to intervention (MBCT or US), immediately following the intervention, and 1 year postintervention. In addition to independent assessments of diagnostic status, standardized self-report measures and assessor ratings of severity and distress associated with the diagnosis of hypochondriasis were used. In the intention-to-treat (ITT) analysis (N = 74), MBCT participants had significantly lower health anxiety than US participants, both immediately following the intervention (Cohen's d = 0.48) and at 1-year follow-up (d = 0.48). The per-protocol (PP) analysis (n = 68) between groups effect size was d = 0.49 at postintervention and d = 0.62 at 1-year follow-up. Mediational analysis showed that change in mindfulness mediated the group changes in health anxiety symptoms. Significantly fewer participants allocated to MBCT than to US met criteria for the diagnosis of hypochondriasis, both immediately following the intervention period (ITT 50.0% vs. 78.9%; PP 47.1% vs. 78.4%) and at 1-year follow-up (ITT 36.1% vs. 76.3%; PP 28.1% vs. 75.0%). MBCT may be a useful addition to usual services for patients with health anxiety. (PsycINFO Database Record (c) 2012 APA, all rights reserved).

A Randomized Clinical Trial of Mindfulness-Based Cognitive Therapy Versus Unrestricted Services for Health Anxiety (Hypochondriasis)

PubMed Central

McManus, Freda; Surawy, Christina; Muse, Kate; Vazquez-Montes, Maria; Williams, J. Mark G.

2012-01-01

Objective: The efficacy and acceptability of existing psychological interventions for health anxiety (hypochondriasis) are limited. In the current study, the authors aimed to assess the impact of mindfulness-based cognitive therapy (MBCT) on health anxiety by comparing the impact of MBCT in addition to usual services (unrestricted services) with unrestricted services (US) alone. Method: The 74 participants were randomized to either MBCT in addition to US (n = 36) or US alone (n = 38). Participants were assessed prior to intervention (MBCT or US), immediately following the intervention, and 1 year postintervention. In addition to independent assessments of diagnostic status, standardized self-report measures and assessor ratings of severity and distress associated with the diagnosis of hypochondriasis were used. Results: In the intention-to-treat (ITT) analysis (N = 74), MBCT participants had significantly lower health anxiety than US participants, both immediately following the intervention (Cohen's d = 0.48) and at 1-year follow-up (d = 0.48). The per-protocol (PP) analysis (n = 68) between groups effect size was d = 0.49 at postintervention and d = 0.62 at 1-year follow-up. Mediational analysis showed that change in mindfulness mediated the group changes in health anxiety symptoms. Significantly fewer participants allocated to MBCT than to US met criteria for the diagnosis of hypochondriasis, both immediately following the intervention period (ITT 50.0% vs. 78.9%; PP 47.1% vs. 78.4%) and at 1-year follow-up (ITT 36.1% vs. 76.3%; PP 28.1% vs. 75.0%). Conclusions: MBCT may be a useful addition to usual services for patients with health anxiety. PMID:22708977

The relationship between environmental advocacy, values, and science: a survey of ecological scientists' attitudes.

PubMed

Reiners, Derek S; Reiners, William A; Lockwood, Jeffrey A

2013-07-01

This article reports the results ofa survey of 1215 nonstudent Ecological Society of America (ESA) members. The results pertain to three series of questions designed to assess ecologists' engagement in various advocacy activities, as well as attitudes on the relationship between environmental advocacy, values, and science. We also analyzed the effects of age, gender, and employment categories on responses. While many findings are reported, we highlight six here. First, ecologists in our sample do not report particularly high levels of engagement in advocacy activities. Second, ecologists are not an ideologically unified group. Indeed, there are cases of significant disagreement among ecologists regarding advocacy, values, and science. Third, despite some disagreement, ecologists generally believe that values consistent with environmental advocacy are more consonant with ecological pursuits than values based on environmental skepticism. Fourth, compared to males, female ecologists tend to be more supportive of advocacy and less convinced that environmentally oriented values perturb the pursuit of science. Fifth, somewhat paradoxically, ecologists in higher age brackets indicate higher engagement in advocacy activities as well as a higher desire for scientific objectivity. Sixth, compared to ecologists in other employment categories, those in government prefer a greater separation between science and the influences of environmental advocacy and values.

Impact of Advocacy Initiatives on Nurses' Motivation to Sustain Momentum in Public Policy Advocacy.

PubMed

Taylor, Melissa R S

2016-01-01

The purpose of this study is to elicit insight from the public policy leaders of 2 regional professional nursing organizations on key qualities of their current advocacy initiatives that motivate nurses to sustain momentum in public policy advocacy beyond a single episode. The goal is to inform quality improvement in the development of future advocacy initiatives to increase sustained engagement of nurses. Social cognitive theory was used as the rationale for this qualitative, descriptive study. A purposive convenience sample of executive leadership and board committee members from 2 regional professional nursing organizations were recruited to complete an initial Web-based electronic survey, followed by separate semistructured interview focus groups. One organization was composed primarily of advanced practice registered nurses, and the other group composed of diverse, multispecialty nursing members with varied educational levels. Nine themes emerged, categorized as facilitators or challenges to the positive impact of advocacy initiatives on nurses' motivation. Highlighting and marketing facilitators to the positive impact of advocacy initiatives on nurses' motivation to sustain momentum in public policy advocacy, while designing and testing new initiatives that address the challenges, may increase the number of nurses who sustain engagement in the policy advocacy process. Copyright © 2016 Elsevier Inc. All rights reserved.

Self-advocacy and cancer: a concept analysis.

PubMed

Hagan, Teresa L; Donovan, Heidi S

2013-10-01

To report an analysis of the concept of self-advocacy among individuals with cancer to clarify its meaning, to differentiate this meaning with related concepts, and to unify understanding of the concept in cancer research and practice. Cancer survivors are increasingly required to assume an active role in their health care. A thorough analysis of how survivors advocate for themselves is a crucial aspect in supporting survivors' ability to engage and manage their care throughout all stages of cancer survivorship. Walker and Avant's eight-step process of conducting a concept analysis was used. PubMed, PsycINFO, and CINAHL databases were searched for articles, reviews, editorials, and grey literature directly addressing self-advocacy. A broad inquiry into the literature from 1960 to 2012 that produces a definition of self-advocacy. Model and contrary cases of self-advocacy demonstrate the concept's application and intricacies. Antecedents to self-advocacy include particular personal characteristics, learned skills, and attainable support. The essential element of self-advocacy and what differentiates it from related concepts, is the internalization of these antecedent resources into self-advocacy thoughts and actions while incorporating personal values and priorities in a way that upholds the survivors' goals and beliefs. A full realization of self-advocacy facilitates a cancer survivor attaining a strong self-concept, sense of control, and adaptation to a life with cancer. Self-advocacy is a process of internalizing skills and resources to act in a way that supports survivors' needs and goals. © 2013 Blackwell Publishing Ltd.

Child advocacy training: curriculum outcomes and resident satisfaction.

PubMed

Chamberlain, Lisa J; Sanders, Lee M; Takayama, John I

2005-09-01

Many health problems affecting children today are based in the community and cannot be easily addressed in the office setting. Child advocacy is an effective approach for pediatricians to take. To describe pediatric residents' choices of advocacy topics and interventions. Cross-sectional observational study. Residents from 3 pediatric training programs participated in the Child Advocacy Curriculum, which featured standardized workshops and the development of individual advocacy projects. To evaluate the curriculum, project descriptions and material products were analyzed to determine individual advocacy topics, topic themes, and targets of project interventions. Differences among programs were assessed. Residents also completed an anonymous questionnaire assessing their experience with the Child Advocacy Curriculum. Residents demonstrated a wide range of interests in selecting advocacy topics: 99 residents chose 38 different topics. The most common topic was obesity (13 residents) followed by health care access (9), teen pregnancy prevention (6), and oral health (5). Themes included health promotion and disease prevention, injury prevention, health care access, children with special health care needs, child development, at-risk populations, and the impact of media on child health. The project interventions targeted the local community most frequently (37%), followed by resident education (27%), hospital systems (21%), and public and health policy (15%). The vast majority of participating residents reported a positive experience with the Child Advocacy Curriculum. The wide range of topics and settings in which residents developed projects illustrates residents' extensive interests and ingenuity in applying needed advocacy solutions to complex child health issues.

Advocacy for mental health: roles for consumer and family organizations and governments.

PubMed

Funk, Michelle; Minoletti, Alberto; Drew, Natalie; Taylor, Jacob; Saraceno, Benedetto

2006-03-01

The World Health Organization urges countries to become more active in advocacy efforts to put mental health on governments' agendas. Health policy makers, planners and managers, advocacy groups, consumer and family organizations, through their different roles and actions, can move the mental health agenda forward. This paper outlines the importance of the advocacy movement, describes some of the roles and functions of the different groups and identifies some specific actions that can be adopted by Ministries of Health. The mental health advocacy movement has developed over the last 30 years as a means of combating stigma and prejudice against people with mental disorders and improving services. Consumer and family organizations and related NGOs have been able to influence governments on mental health policies and laws and educating the public on social integration of people with mental disorders. Governments can promote the development of a strong mental health advocacy sector without compromising this sector's independence. For instance, they can publish and distribute a directory of mental health advocacy groups, include them in their mental health activities and help fledgling groups become more established. There are also some advocacy functions that government officials can, and indeed, should perform themselves. Officials in the ministry of health can persuade officials in other branches of government to make mental health more of a priority, support advocacy activities with both general health workers and mental health workers and carry out public information campaigns about mental disorders and how to maintain good mental health. In conclusion, the World Health Organization believes mental health advocacy is one of the pillars to improve mental health care and the human rights of people with mental disorders. It is hoped that the recommendations in this article will help government officials and activists to strengthen national advocacy movements.

Problem-based Learning Using the Online Medicare Part D Plan Finder Tool

PubMed Central

Stebbins, Marilyn R.; Lai, Eric; Smith, Amanda R.; Lipton, Helene Levens

2008-01-01

Objectives To implement didactic and problem-based learning curricular innovations aimed at increasing students' knowledge of Medicare Part D, improving their ability to apply the online Medicare Prescription Drug Plan Finder tool to a patient case, and improving their attitudes toward patient advocacy for Medicare beneficiaries. Methods A survey instrument and a case-based online Medicare Prescription Drug Plan Finder tool exercise were administered to a single group (n = 120) of second-year pharmacy graduate students prior to and following completion of a course on health policy. Three domains (knowledge, skill mastery and attitudes) were measured before and after two 90-minute lectures on Medicare Part D. Results The online Medicare Prescription Drug Plan Finder exercise and Medicare Part D didactic lectures had positive effects on students' knowledge of Part D, attitudes toward patient advocacy, and ability to accurately use the Medicare Prescription Drug Plan Finder tool. Conclusions The success of these didactic and problem-based curricular innovations in improving pharmacy students' knowledge, skills, and attitudes regarding Part D warrants further evaluation to determine their portability to clinical settings and other pharmacy schools. PMID:18698399

Prevention and control of viral hepatitis: the role and impact of patient and advocacy groups in and outside Europe.

PubMed

FitzSimons, David W

2008-10-23

The Viral Hepatitis Prevention Board and the European Liver Patients Association jointly organized a meeting (Lucca, Italy, 13-14 March 2008) to review the role and impact of patients' organizations and advocacy groups in Europe and the USA on the prevention and control of viral hepatitis. The national and international groups described a wide variety of organizational structures, means of funding, services and activities. Participants reported numerous obstacles and difficulties, ranging from limited funding, weak governmental support and the lack of a high-profile lobby to residual prejudice against people with viral hepatitis and cultural barriers. The groups' experiences formed an impressive list of strengths and achievements, including international and national campaigns, networking, building of excellent relations with the media, support from and respect of professional bodies, greater respect of patients' human rights, improved access to counselling and treatment, and influence on national and international policies. The meeting highlighted opportunities, for example, to complete programmes of immunization against hepatitis B, to convince governments of the economic value of public health interventions, and raise awareness of the value of a healthy liver.

Ethical decision-making in intensive care: are nurses suitable patient advocates?

PubMed

Norrie, P

1997-06-01

According to the United Kingdom Central Council for Nursing, Midwifery and Health Visiting (UKCC) code of conduct (1992), nurses in Britain are expected to act as patient advocates. An advocate is someone who 'pleads for another' (Concise Oxford Dictionary 1982). However, it has been shown that advocacy is a complex issue and it is debatable as to whether or not it is a legitimate attribute of the role of the nurse (Gates 1995). Mallik (1997) also finds that advocacy can be a risky career option. Professional codes of conduct spell out duties, but do not give moral guidance. Phrases such as 'promote and safeguard the well-being of the patient' (UKCC 1992) are used, but although undoubtedly well-intentioned, this is platitudinous and these codes commonly shed little light on how to define an action that is to the patient's benefit or detriment. It is tempting to suggest that they are used as a drunken man uses a street lamp; more for support than illumination. Castledine (1981) identified a number of factors that would make a nurse an inappropriate advocate and these will be discussed within the context of intensive care units (ICUs).

Proceedings on Combating the Unrestricted Warfare Threat: Integrating Strategy, Analysis, and Technology, 20-21 March 2007

DTIC Science & Technology

2007-03-01

Prosthetics to enable return to units without loss of capability Quantum...and will give us a big advantage in terms of unrestricted warfare. Figure 17 high-Productivity Computing System PRoSThETICS We have an exciting...program in prosthetics (Figure 18). It started with a monkey at Duke University. We put microelectronic implants into her brain, taught her

PIPI: PTM-Invariant Peptide Identification Using Coding Method.

PubMed

Yu, Fengchao; Li, Ning; Yu, Weichuan

2016-12-02

In computational proteomics, the identification of peptides with an unlimited number of post-translational modification (PTM) types is a challenging task. The computational cost associated with database search increases exponentially with respect to the number of modified amino acids and linearly with respect to the number of potential PTM types at each amino acid. The problem becomes intractable very quickly if we want to enumerate all possible PTM patterns. To address this issue, one group of methods named restricted tools (including Mascot, Comet, and MS-GF+) only allow a small number of PTM types in database search process. Alternatively, the other group of methods named unrestricted tools (including MS-Alignment, ProteinProspector, and MODa) avoids enumerating PTM patterns with an alignment-based approach to localizing and characterizing modified amino acids. However, because of the large search space and PTM localization issue, the sensitivity of these unrestricted tools is low. This paper proposes a novel method named PIPI to achieve PTM-invariant peptide identification. PIPI belongs to the category of unrestricted tools. It first codes peptide sequences into Boolean vectors and codes experimental spectra into real-valued vectors. For each coded spectrum, it then searches the coded sequence database to find the top scored peptide sequences as candidates. After that, PIPI uses dynamic programming to localize and characterize modified amino acids in each candidate. We used simulation experiments and real data experiments to evaluate the performance in comparison with restricted tools (i.e., Mascot, Comet, and MS-GF+) and unrestricted tools (i.e., Mascot with error tolerant search, MS-Alignment, ProteinProspector, and MODa). Comparison with restricted tools shows that PIPI has a close sensitivity and running speed. Comparison with unrestricted tools shows that PIPI has the highest sensitivity except for Mascot with error tolerant search and ProteinProspector. These two tools simplify the task by only considering up to one modified amino acid in each peptide, which results in a higher sensitivity but has difficulty in dealing with multiple modified amino acids. The simulation experiments also show that PIPI has the lowest false discovery proportion, the highest PTM characterization accuracy, and the shortest running time among the unrestricted tools.

Legal issues for transgender people: a review of persistent threats.

PubMed

Green, Jamison

2017-10-01

Background The legal status of transgender (trans) people is in constant flux. Over the past 70 years, gradually increasing transgender visibility, national and global advocacy, and, more recently, widespread Internet access, communication, and broadening support from allies, have all contributed to successful campaigns that have improved transgender lives and legitimised transgender. Still, traumatic interactions with the legal system or policing agencies remain plentiful. This is a very general overview of the most common legal issues confronting trans people. It aims to inform medical and mental health providers about the trepidation with which their patients and clients must engage legal systems, and the scope of their concerns, which ultimately affect their health. This review relies upon reports generated by advocacy organisations based on population surveys in several countries, the projects undertaken by legal and human rights advocacy groups, the topics most frequently discussed in academic texts examining transgender legal issues, and draws upon the author's personal advocacy experience. The most complicated and persistent issues are identity recognition, family law and relationship issues, adverse discrimination and anti-transgender violence and its aftermath. Criminal law, almost universally, treats trans people according to the lowest common denominator, their genital status, which supposedly supports expediency and "safety". Global legal and human rights efforts remain desperately needed to lift transgender people from the margins of society and provide them with equal opportunities to lead healthy and fulfilling lives. Access to appropriate and meaningful health care is a crucial element necessary to affirm the humanity of any person.

"We Are Not Really Marketing Mental Health": Mental Health Advocacy in Zimbabwe.

PubMed

Hendler, Reuben; Kidia, Khameer; Machando, Debra; Crooks, Megan; Mangezi, Walter; Abas, Melanie; Katz, Craig; Thornicroft, Graham; Semrau, Maya; Jack, Helen

2016-01-01

Few people with mental disorders in low and middle-income countries (LMICs) receive treatment, in part because mental disorders are highly stigmatized and do not enjoy priority and resources commensurate with their burden on society. Advocacy has been proposed as a means of building political will and community support for mental health and reducing stigma, but few studies have explored the practice and promise of advocacy in LMICs. We conducted 30 semi-structured interviews with leaders in health and mental health in Zimbabwe to explore key stakeholder perceptions on the challenges and opportunities of the country's mental health system. We coded the transcripts using the constant comparative method, informed by principles of grounded theory. Few interview questions directly concerned advocacy, yet in our analysis, advocacy emerged as a prominent, cross-cutting theme across participants and interview questions. Two thirds of the respondents discussed advocacy, often in depth, returning to the concept throughout the interview and emphasizing their belief in advocacy's importance. Participants described six distinct components of advocacy: the advocates, to whom they advocate ("targets"), what they advocate for ("asks"), how advocates reach their targets ("access"), how they make their asks ("arguments"), and the results of their advocacy ("outcomes"). Despite their perception that mental health is widely misunderstood and under-appreciated in Zimbabwe, respondents expressed optimism that strategically speaking out can reduce stigma and increase access to care. Key issues included navigating hierarchies, empowering service users to advocate, and integrating mental health with other health initiatives. Understanding stakeholder perceptions sets the stage for targeted development of mental health advocacy in Zimbabwe and other LMICs.

Residents as health advocates: The development, implementation and evaluation of a child advocacy initiative at the University of Toronto (Toronto, Ontario).

PubMed

Au, Hosanna; Harrison, Megan; Ahmet, Alexandra; Orsino, Angela; Beck, Carolyn E; Tallett, Susan; Gans, Marvin; Birken, Catherine S

2007-09-01

Advocacy is an integral part of a paediatrician's role. The Royal College of Physicians and Surgeons of Canada has identified advocacy as one of the essential Canadian Medical Education Directives for Specialists competencies, and participation in child advocacy work as an important component of paediatric residency training. The objective of the present paper was to describe the development, implementation and evaluation of the first four years of the child advocacy initiative at the University of Toronto (Toronto, Ontario). Ideas for community child advocacy projects were generated through a literature review, and a link to a local elementary school was identified. Teacher and parent focus groups were conducted to identify areas for resident involvement. Workshops were then developed, implemented and evaluated by paediatric residents. Six child advocacy projects between 2001 and 2004 were conducted based on results from the focus groups. These included annual clothing drives, as well as workshops for parents and children about nutrition, safety, parenting, illness management and basic first aid. More than 95% of parents reported that the workshops were useful or very useful, more than 92% felt that they learned something new and more than 83% wanted the residents to return for further workshops. Teachers and residents gave positive informal feedback. Through the child advocacy initiative, paediatric residents had the opportunity to develop skills in advocacy, learn about the determinants of child health and become community partners in advocating for children. Such an initiative can be incorporated into the residency curriculum to help residents develop competency in advocacy.

Health advocacy.

PubMed

Hubinette, Maria; Dobson, Sarah; Scott, Ian; Sherbino, Jonathan

2017-02-01

In the medical profession, activities related to ensuring access to care, navigating the system, mobilizing resources, addressing health inequities, influencing health policy and creating system change are known as health advocacy. Foundational concepts in health advocacy include social determinants of health and health inequities. The social determinants of health (i.e. the conditions in which people live and work) account for a significant proportion of an individual's and a population's health outcomes. Health inequities are disparities in health between populations, perpetuated by economic, social, and political forces. Although it is clear that efforts to improve the health of an individual or population must consider "upstream" factors, how this is operationalized in medicine and medical education is controversial. There is a lack of clarity around how health advocacy is delineated, how physicians' scope of responsibility is defined and how teaching and assessment is conceptualized and enacted. Numerous curricular interventions have been described in the literature; however, regardless of the success of isolated interventions, understanding health advocacy instruction, assessment and evaluation will require a broader examination of processes, practices and values throughout medicine and medical education. To support the instruction, assessment and evaluation of health advocacy, a novel framework for health advocacy is introduced. This framework was developed for several purposes: defining and delineating different types and approaches to advocacy, generating a "roadmap" of possible advocacy activities, establishing shared language and meaning to support communication and collaboration across disciplines and providing a tool for the assessment of learners and for the evaluation of teaching and programs. Current approaches to teaching and assessment of health advocacy are outlined, as well as suggestions for future directions and considerations.

Self-Advocacy and Cancer: A Concept Analysis

PubMed Central

Hagan, Teresa L.; Donovan, Heidi S.

2013-01-01

Aim This paper is a report of an analysis of the concept of self-advocacy among individuals with cancer to clarify its meaning, to differentiate this meaning with related concepts and to unify understanding of the concept in cancer research and practice. Background Cancer survivors are increasingly required to assume an active role in their healthcare. A thorough analysis of how survivors advocate for themselves is a crucial aspect in supporting survivors’ ability to engage and manage their care throughout all stages of cancer survivorship. Design Walker and Avant’s eight-step process of conducting a concept analysis was used. Data Sources PubMed, PsycINFO and CINAHL databases were searched for articles, reviews, editorials and gray literature directly addressing self-advocacy. Review Methods A broad inquiry into the literature from 1960 – 2012 that produces a definition of self-advocacy. Model and contrary cases of self-advocacy demonstrate the concept’s application and intricacies. Results Antecedents to self-advocacy include particular personal characteristics, learned skills and attainable support. The essential element of self-advocacy and what differentiates it from related concepts, is the internalization of these antecedent resources into self-advocacy thoughts and actions while incorporating personal values and priorities in a way that upholds the survivors’ goals and beliefs. A full realization of self-advocacy facilitates a cancer survivor attaining a strong self-concept, sense of control and adaptation to a life with cancer. Conclusions Self-advocacy is a process of internalizing skills and resources to act in a way that supports survivors’ needs and goals. PMID:23347224

Comment on Cross, Fine, Jones, and Walsh (2012): Do Mental Health Professionals Who Serve on/with Child Advocacy Centers Experience Role Conflict?

ERIC Educational Resources Information Center

Friend, Colleen

2012-01-01

Cross, Fine, Jones, and Walsh's (2012) article "Mental Health Professionals in Children's Advocacy Centers: Is There Role Conflict?" challenges two recent publications' criticisms that child advocacy centers create role conflict for mental health professionals and explains how child advocacy centers actually work, describing the different roles…

Eta Sigma Gamma Members' Participation in Advocacy Activities and Opinions on Advocacy Priorities for the Organization

ERIC Educational Resources Information Center

Cox, Carol; Haidar, Salma; Brookins-Fisher, Jodi; Thompson, Amy; Deakins, Bethany; Bishop, Chaundra

2014-01-01

Advocacy for health policies and programs can impact large segments of the population with the goal of promoting and protecting the nation's health. Historically, advocacy has not been viewed as seriously as other components of health education, and involvement in public policy work has been moderate by health education practitioners and health…

Brief Report: The Feasibility and Effectiveness of an Advocacy Program for Latino Families of Children with Autism Spectrum Disorder

ERIC Educational Resources Information Center

Burke, Meghan M.; Magaña, Sandra; Garcia, Marlene; Mello, Maria P.

2016-01-01

Latino, Spanish-speaking families of children with autism spectrum disorder (ASD) face unique barriers in special education advocacy. Although advocacy programs are becoming more common in the United States, none of these programs target Latino families. This is a pilot study to examine the feasibility and effectiveness of an advocacy program for…

Building Strategic Business and Industry Training Partnerships that Lead to Legislative Advocacy

ERIC Educational Resources Information Center

Holle, Teri L.

2012-01-01

Organization is essential to just about every sort of operation, but it is especially important in advocacy work. Without organization, an advocacy group may be nothing more than several individuals who agree on some large issue and try to react to threats to what they believe in. A well-functioning advocacy group has to have common goals and a…

The Commissioning and Provision of Advocacy for Problem Drug Users in English DATS: A Cross-Sectional Survey

ERIC Educational Resources Information Center

Cargill, Tamsin; Weaver, Tim D.; Patterson, Sue

2012-01-01

Aims: This study investigated the commissioning and delivery of advocacy for problem drug users. We aimed to quantify provision, describe the commissioning of advocacy services in Drug Action Teams (DATs) and to identify factors influencing advocacy provision. Methods: A cross-sectional survey of a randomly selected sample of 50 English DATs. The…

Is it gluten-free? Relationship between self-reported gluten-free diet adherence and knowledge of gluten content of foods

PubMed Central

Silvester, Jocelyn A; Weiten, Dayna; Graff, Lesley A; Walker, John R; Duerksen, Donald R

2017-01-01

Objectives To assess the relationship between self-reported adherence to a gluten-free diet (GFD) and the ability to determine correctly the appropriateness of particular foods in a GFD. Research Methods & Procedures Persons with celiac disease were recruited through clinics and support groups. Participants completed a questionnaire with items related to GFD information sources, gluten content of 17 common foods (food to avoid, food allowed, food to question), GFD adherence and demographics. Diagnosis was self-reported. Results The 82 respondents (88% female) had a median of 6 years GFD experience. Most (55%) reported strict adherence, 18% reported intentional gluten consumption and 21% acknowledged rare unintentional gluten consumption. Cookbooks, advocacy groups and print media were the most commonly used GFD information sources (85–92%). No participant identified correctly the gluten content of all 17 foods; only 30% identified at least 14 foods correctly. The median score on the Gluten-Free Diet Knowledge Scale (GFD-KS) was 11.5 (IQR 10–13). One in five incorrect responses put the respondent at risk of consuming gluten. GFD-KS scores did not correlate with self-reported adherence or GFD duration. Patient advocacy group members scored significantly higher on the GFD-KS than non-members (12.3 vs. 10.6; p<0.005). Conclusions Self-report measures which do not account for the possibility of unintentional gluten ingestion overestimate GFD adherence. Individuals who believe they are following a GFD are not readily able to correctly identify foods that are GF, which suggests ongoing gluten consumption may be occurring, even among patients who believe they are “strictly” adherent. The role of patient advocacy groups and education to improve outcomes through improved adherence to a GFD requires further research. PMID:27131408

Is it gluten-free? Relationship between self-reported gluten-free diet adherence and knowledge of gluten content of foods.

PubMed

Silvester, Jocelyn A; Weiten, Dayna; Graff, Lesley A; Walker, John R; Duerksen, Donald R

2016-01-01

To assess the relationship between self-reported adherence to a gluten-free diet (GFD) and the ability to determine correctly the appropriateness of particular foods in a GFD. Persons with celiac disease were recruited through clinics and support groups. Participants completed a questionnaire with items related to GFD information sources, gluten content of 17 common foods (food to avoid, food allowed, and food to question), GFD adherence, and demographic characteristics. Diagnosis was self-reported. The 82 respondents (88% female) had a median of 6 y GFD experience. Most (55%) reported strict adherence, 18% reported intentional gluten consumption and 21% acknowledged rare unintentional gluten consumption. Cookbooks, advocacy groups, and print media were the most commonly used GFD information sources (85-92%). No participant identified correctly the gluten content of all 17 foods; only 30% identified at least 14 foods correctly. The median score on the Gluten-Free Diet Knowledge Scale (GFD-KS) was 11.5 (interquartile ratio, 10-13). One in five incorrect responses put the respondent at risk of consuming gluten. GFD-KS scores did not correlate with self-reported adherence or GFD duration. Patient advocacy group members scored significantly higher on the GFD-KS than non-members (12.3 versus 10.6; P < 0.005). Self-report measures which do not account for the possibility of unintentional gluten ingestion overestimate GFD adherence. Individuals who believe they are following a GFD are not readily able to correctly identify foods that are GF, which suggests ongoing gluten consumption may be occurring, even among patients who believe they are "strictly" adherent. The role of patient advocacy groups and education to improve outcomes through improved adherence to a GFD requires further research. Copyright © 2016 Elsevier Inc. All rights reserved.

Difficult relationships between parents and physicians of children with cancer: A qualitative study of parent and physician perspectives.

PubMed

Mack, Jennifer W; Ilowite, Maya; Taddei, Sarah

2017-02-15

Previous work on difficult relationships between patients and physicians has largely focused on the adult primary care setting and has typically held patients responsible for challenges. Little is known about experiences in pediatrics and more serious illness; therefore, we examined difficult relationships between parents and physicians of children with cancer. This was a cross-sectional, semistructured interview study of parents and physicians of children with cancer at the Dana-Farber Cancer Institute and Boston Children's Hospital (Boston, Mass) in longitudinal primary oncology relationships in which the parent, physician, or both considered the relationship difficult. Interviews were audiotaped, transcribed, and subjected to a content analysis. Dyadic parent and physician interviews were performed for 29 relationships. Twenty were experienced as difficult by both parents and physicians; 1 was experienced as difficult by the parent only; and 8 were experienced as difficult by the physician only. Parent experiences of difficult relationships were characterized by an impaired therapeutic alliance with physicians; physicians experienced difficult relationships as demanding. Core underlying issues included problems of connection and understanding (n = 8), confrontational parental advocacy (n = 16), mental health issues (n = 2), and structural challenges to care (n = 3). Although problems of connection and understanding often improved over time, problems of confrontational advocacy tended to solidify. Parents and physicians both experienced difficult relationships as highly distressing. Although prior conceptions of difficult relationships have held patients responsible for challenges, this study has found that difficult relationships follow several patterns. Some challenges, such as problems of connection and understanding, offer an opportunity for healing. However, confrontational advocacy appears especially refractory to repair; special consideration of these relationships and avenues for repairing them are needed. Cancer 2017;123:675-681. © 2016 American Cancer Society. © 2016 American Cancer Society.

Qualitative breakdown of the unrestricted Hartree-Fock energy

DOE Office of Scientific and Technical Information (OSTI.GOV)

Mori-Sánchez, Paula, E-mail: paula.mori@uam.es; Cohen, Aron J., E-mail: ajc54@cam.ac.uk

2014-10-28

The stretching of closed-shell molecules is a qualitative problem for restricted Hartree-Fock that is usually circumvented by the use of unrestricted Hartree-Fock (UHF). UHF is well known to break the spin symmetry at the Coulson-Fischer point, leading to a discontinuous derivative in the potential energy surface and incorrect spin density. However, this is generally not considered as a major drawback. In this work, we present a set of two electron molecules which magnify the problem of symmetry breaking and lead to drastically incorrect potential energy surfaces with UHF. These molecules also fail with unrestricted density-functional calculations where a functional suchmore » as B3LYP gives both symmetry breaking and an unphysically low energy due to the delocalization error. The implications for density functional theory are also discussed.« less

Latinos and political advocacy for cancer control in a United States-Mexico border community.

PubMed

Murray, Kate E; Barbour, Lynda; Morlett, Alejandra; Garcini, Luz

2014-01-01

Health policy interventions provide powerful tools for addressing health disparities. The Latino community is one of the fastest growing communities in the United States yet is largely underrepresented in government and advocacy efforts. This study includes 42 Latino adults (M age = 45 years) who participated in focus group discussions and completed a brief questionnaire assessing their experiences with political health advocacy. Qualitative analyses revealed participants considered cancer a concern for the Latino community, but there was a lack of familiarity with political advocacy and its role in cancer control. Participants identified structural, practical, cultural, and contextual barriers to engaging in political health advocacy. This article presents a summary of the findings that suggest alternative ways to engage Latinos in cancer control advocacy.

Army Information Technology Procurement: A Business Process Analysis

DTIC Science & Technology

2015-03-27

unrestricted access to the Land War Net when necessary. The Corps of Engineers has IT systems floating next to a dam this week, and next week it will...time available to complete the research; 9 limited access to stakeholders, and SMEs; limited authority to implement business process improvement...Reservists, National Guard, and Medical Corps all maintain their own independent networks, but require unrestricted access to the Land War Net when

Mosquito-borne Arbovirus Surveillance at Selected Sites in Diverse Ecological Zones of Kenya 2007 -- 2012

DTIC Science & Technology

2013-05-10

circulating arboviruses in the region except the Yellow Fever vaccine and Rift Valley Fever vaccine for livestock use only. Early detection of virus...distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use ...Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use , distribution, and reproduction in any medium

Applying a Pattern-Centered Approach to Understanding How Attachment, Gender Beliefs, and Homosociality Shape College Men's Sociosexuality

PubMed Central

Calzo, Jerel P.

2012-01-01

Although early research and the popular press have characterized college men as universal beneficiaries of uncommitted sex, emerging research notes considerable variability in men's sociosexuality (i.e., uncommitted sexual beliefs, desires, and behaviors). This study examined how diversity in sociosexuality is tied to the ways in which attachment orientations, conformity to masculinity norms, and homosocial engagement (i.e., non-romantic same-sex bonds) are organized across individuals. Latent profile analysis of 495 college males (ages 17–25, 62% White, 83.5% Heterosexual) detected five subgroups: Fully Unrestricted (10% of sample; high on sociosexuality and conformity to masculinity norms); Cognitively Unrestricted (36%; comparable to Fully Unrestricteds, but low on sociosexual behavior), Fully Restricted (30%; opposite on all constructs when compared to Fully Unrestricteds); Avoidant (16%; similar to Fully Restricteds, but with greater attachment avoidance); and Discrepant (8%; above average on sociosexual behavior, but discordant within and across constructs). There were notable demographic, personality, and behavioral differences between the subgroups (e.g., nearly 50% of the Discrepants self-identified as sexual minorities, Fully Restricteds were the most religious, Avoidants were the most shy). Findings indicate that college men's sociosexuality is highly nuanced and suggest the need for additional work to understand how attachment, masculinity norms, and homosociality shape men's sexual relationships. PMID:23311325

Applying a pattern-centered approach to understanding how attachment, gender beliefs, and homosociality shape college men's sociosexuality.

PubMed

Calzo, Jerel P

2014-01-01

Although early research and the popular press have characterized college men as universal beneficiaries of uncommitted sex, emerging research notes considerable variability in men's sociosexuality (i.e., uncommitted sexual beliefs, desires, and behaviors). This study examined how diversity in sociosexuality is tied to the ways in which attachment orientations, conformity to masculinity norms, and homosocial engagement (i.e., nonromantic same-sex bonds) are organized across individuals. Latent profile analysis of 495 college males (ages 17 to 25, 62% White, 83.5% heterosexual) detected five subgroups: Fully Unrestricted (10% of sample; high on sociosexuality and conformity to masculinity norms); Cognitively Unrestricted (36%; comparable to Fully Unrestricteds but low on sociosexual behavior), Fully Restricted (30%; opposite on all constructs when compared to Fully Unrestricteds); Avoidant (16%; similar to Fully Restricteds but with greater attachment avoidance); and Discrepant (8%; above average on sociosexual behavior but discordant within and across constructs). There were notable demographic, personality, and behavioral differences among the subgroups (e.g., nearly 50% of the Discrepants self-identified as sexual minorities; Fully Restricteds were the most religious; Avoidants were the most shy). Findings indicate that college men's sociosexuality is highly nuanced and suggest the need for additional work to understand how attachment, masculinity norms, and homosociality shape men's sexual relationships.

Seasonal habitat-use patterns of nekton in a tide-restricted and unrestricted New England salt marsh

USGS Publications Warehouse

Raposa, K.B.; Roman, C.T.

2001-01-01

Many New England salt marshes remain tide-restricted or are undergoing tidal restoration. Hydrologic manipulation of salt marshes affects marsh biogeochemistry and vegetation patterns, but responses by fishes and decapod crustaceans (nekton) remain unclear, This study examines nekton habitat-use patterns in the tide-restricted Hatches Harbor salt marsh (Provincetown, Massachusetts) relative to a downstream, unrestricted marsh. Nekton assemblages were sampled in tidal creek, marsh pool, and salt marsh surface habitats. Pools and creeks were sampled every two weeks for one year to account for seasonal variability, and the marsh surface was sampled at two-week intervals in summer and fall. Density, richness, and community composition of nekton in creek and marsh surface habitats were similar between the unrestricted and restricted marsh, but use of pools differed drastically on the two sides of the tide-restricting dike. In 95% of the cases tested, restricted marsh habitats provided equal or greater habitat value for nekton than the same habitat in the unrestricted marsh (based on density), suggesting that the restricted marsh did not provide a degraded habitat for most species. For some species, the restricted marsh provided nursery, breeding, and overwintering habitat during different seasons, and tidal restoration of this salt marsh must be approached with care to prevent losses of these valuable marsh functions.

MBCP - Patients - Support Groups | Center for Cancer Research

Cancer.gov

Support Groups Bladder Cancer Advocacy Network (BCAN) – a community of advocates, survivors, medical and research professionals united in support of people touched by bladder cancer. American Bladder Cancer Society (ABCS) – ABCS features a bladder cancer forum, treatment center finder, blog, and more . . .

For-Profit Entities and Continuing Education: A Nursing Perspective.

ERIC Educational Resources Information Center

Harper, Jane

1994-01-01

Is it ethical to allow biomedical industries to fund nursing continuing education? The history of for-profit entities' relationship to organized medicine shows that nursing should make its voice heard in boardrooms and preserve its patient advocacy role when cooperating with industry. (SK)

Health advocacy: a vital step in attaining human rights for adults with intellectual disability.

PubMed

Brolan, C E; Boyle, F M; Dean, J H; Taylor Gomez, M; Ware, R S; Lennox, N G

2012-11-01

People with intellectual disability (ID) experience health inequity compared with the general population, a key contributing factor being disparities in social determinants of health. The enactment of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) provides a platform for the progression and promotion of health and other interconnected rights to address barriers to the highest attainable standard of health for this populace. Rights can be brought to life through advocacy efforts. This paper explores the meaning, perceptions and experiences of advocacy by family members and paid support workers of adults with ID and locates the findings within a health and human rights discourse. As part of a larger randomised controlled trial, 113 parents and 84 support workers of adults with ID completed a telephone interview that included open-ended questions about their understanding and experiences of advocacy. Thematic analysis was used to identify relevant themes. Five key themes were identified. The first underscored how advocacy to 'speak up' for the person with ID is integral to both parent and support worker roles. The second and third themes considered the contexts for advocacy efforts. Access to quality health care was a core concern, along with advocacy across other areas and sectors to address the person's wider psychosocial needs. The remaining themes highlighted the many dimensions to advocacy, including differences between parent and support worker views, with parental advocacy being an expression of 'caring' and support workers motivated by a 'duty of care' to protect the individual's 'rights'. Parent and support worker advocacy provides one means to address the social determinants of health and fulfilment of health rights of and for people with ID. Policy and practice in the context of governmental obligation under the CRPD should support advocacy and make health rights the reality not rhetoric for this group of men and women. © 2012 The Authors. Journal of Intellectual Disability Research © 2012 Blackwell Publishing Ltd.

Effect of Advocacy Training During Dental Education on Pediatric Dentists' Interest in Advocating for Community Water Fluoridation.

PubMed

Vishnevetsky, Anna; Mirman, Jennifer; Bhoopathi, Vinodh

2018-01-01

Dentists, like other health professionals, are uniquely positioned to be public health advocates. One venue where dental students can become skilled public health advocates is in dental education programs. However, debates about the need and importance of integrating advocacy training into dental curricula exist. Therefore, the aim of this study was to assess the association between pediatric dentists' interest in and willingness to participate in an advocacy-related activity and their prior training in advocacy during dental education. The advocacy activity used in the study related to community water fluoridation (CWF). A 22-item pilot-tested online survey was sent in February-May 2016 to 5,394 pediatric dentists who were members of the American Academy of Pediatric Dentistry. The final response rate was 16% (n=830). Most (77%) of the respondents were willing to advocate for CWF initiatives at the community and/or state levels. Only 44% of the respondents reported receiving training in advocacy during their predoctoral dental and/or pediatric dental residency education. The pediatric dentists who were willing to advocate for CWF initiatives had 2.7 times (95% CI: 1.63-4.39, p<0.0001) the odds of having received advocacy training during their dental education compared to those who were unwilling. These results suggest a positive association between the pediatric dentists' willingness to advocate for CWF and their prior advocacy training during dental education. This finding provides support for the Commission on Dental Accreditation's requirement for pediatric dental residency programs to train residents in advocacy. Because dentists are respected leaders in their community, the study results also support the integration of advocacy training into predoctoral dental curricula.

Does public health advocacy seek to redress health inequities? A scoping review.

PubMed

Cohen, Benita E; Marshall, Shelley G

2017-03-01

The public health (PH) sector is ideally situated to take a lead advocacy role in catalysing and guiding multi-sectoral action to address social determinants of health inequities, but evidence suggests that PH's advocacy role has not been fully realised. The purpose of this review was to determine the extent to which the PH advocacy literature addresses the goal of reducing health and social inequities, and to increase understanding of contextual factors shaping the discourse and practice of PH advocacy. We employed scoping review methods to systematically examine and chart peer-reviewed and grey literature on PH advocacy published from January 1, 2000 to June 30, 2015. Databases and search engines used included: PubMed, CINAHL, PsycINFO, Social Sciences Citation Index, Google Scholar, Google, Google Books, ProQuest Dissertations and Theses, Grey Literature Report. A total of 183 documents were charted, and included in the final analysis. Thematic analysis was both inductive and deductive according to the objectives. Although PH advocacy to address root causes of health inequities is supported theoretically and through professional practice standards, the empirical literature does not reflect that this is occurring widely in PH practice. Tensions within the discourse were noted and multiple barriers to engaging in PH advocacy for health equity were identified, including a preoccupation with individual responsibilities for healthy lifestyles and behaviours, consistent with the emergence of neoliberal governance. If the PH sector is to fulfil its advocacy role in catalysing action to reduce health inequities, it will be necessary to address advocacy barriers at multiple levels, promote multi-sectoral efforts that implicate the state and corporations in the production of health inequities, and rally state involvement to redress these injustices. © 2016 John Wiley & Sons Ltd.

Towards a global framework for capacity building for non-communicable disease advocacy in low- and middle-income countries.

PubMed

Shilton, Trevor; Champagne, Beatriz; Blanchard, Claire; Ibarra, Lorena; Kasesmup, Vijj

2013-12-01

Non-communicable diseases (NCDs) represent an increasing proportion of morbidity and mortality throughout the world. Sustained advocacy, carried out by a skilled workforce, is an important strategy to realize the political will and implement the policy changes necessary to reduce the global burden of NCDs. Competencies for effective advocacy include a combination of scientific and technical as well as communication-based skills. Recognizing the need to build local capacity for NCD advocacy in low- and middle-income countries (LMIC), the International Union for Health Promotion and Education (IUHPE), the US Centers for Disease Control and Prevention (CDC), the National Heart Foundation of Australia and the InterAmerican Heart Foundation joined efforts to conduct two pilot advocacy courses, one in Thailand and one in Colombia. A Global Advisory Group engaged a Local Organizing Committee in each country to ensure the courses would meet the needs of the local stakeholders. While both courses contained a set of key competencies and helped participants develop joint strategies for moving forward with consensus advocacy targets, the courses differed in content and participant background depending on the local context. A key goal of the courses was to determine and describe the lessons learned and make recommendations for a framework to be used for future advocacy capacity-building activities in LMIC. The planning and execution of each course generated lessons in the following five areas that informed the development of a global framework for capacity building for NCD advocacy: 1) using a comprehensive theoretical framework to teach advocacy competencies, 2) engaging key stakeholders, 3) meeting local needs and priorities, 4) planning local logistics, and 5) ensuring the skills obtained through training are applied to sustained advocacy for NCDs.

A human rights approach to advocacy for people with dementia: A review of current provision in England and Wales.

PubMed

Dixon, Jeremy; Laing, Judy; Valentine, Christine

2018-01-01

In this article, we review current advocacy services for people with dementia in England and Wales (provided, respectively, under the Mental Capacity Act 2005 , the Mental Health Act 1983 /2007 and the Care Act 2014) through the lens of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). We examine what a human rights' approach to advocacy support would entail, and whether current frameworks in England and Wales are adequate for this approach and provide a sufficient safeguard. First, we consider how the human rights of persons with dementia have become increasingly important and the extent to which the CRPD provides an opportunity to bolster safeguards and protection. Second, we discuss cause and case advocacy, and how these advocacy models could be shaped by the CRPD to promote the rights of persons with dementia at each stage of the disease. Third, we highlight current dilemmas and challenges in the provision of advocacy support in England and Wales by focusing on case law, commissioning of services and current practice. In particular, we analyse how the different legislative schemes have given rise to some confusion about the various advocacy provisions, as well as potential for overlap and discrepancies between different regimes. We also highlight the need for further research to address important gaps in knowledge, including the scale of need, patterns of referral and attitudes to advocacy services. The article concludes by highlighting how advocacy support could be recalibrated as a universal right to promote the aims and aspirations of the CRPD, and how education is needed to address the stigma of dementia and promote the benefits of advocacy in protecting the rights of those with dementia.

The Effects of Advocacy Advertising and Situational Crisis on Perceptions of Social Responsibility, Potential Supportive Behavior and Attitudes Toward Advertisements.

ERIC Educational Resources Information Center

Cozby, Jeanie G.; And Others

Data were collected from 176 college students in a study of the effects of corporate advocacy advertising in crisis situations. The subjects read one of two sets of oil company advertisements, one set using a low advocacy and the other set using a high advocacy approach to explain company activities in relation to current events and social issues.…

Kentucky Teen Institute: Results of a 1-Year, Health Advocacy Training Intervention for Youth.

PubMed

King, Kristi M; Rice, Jason A; Steinbock, Stacie; Reno-Weber, Ben; Okpokho, Ime; Pile, Amanda; Carrico, Kelly

2015-11-01

The Kentucky Teen Institute trains youth throughout the state to advocate for policies that promote health in their communities. By evaluating two program summits held at universities, regularly scheduled community meetings, ongoing technical support, and an advocacy day at the state Capitol, the aims of this study were to assess the impact of the intervention on correlates of youths' advocacy intentions and behaviors and to assess youth participants' and other key stakeholders' perceptions of the intervention. An ecological model approach and the theory of planned behavior served as theoretical frameworks from which pre-post, one-group survey and qualitative data were collected (June 2013-June 2014). An equal number of low-income and non-low-income youth representing five counties participated in the Summer Summit pretest (n = 24) and Children's Advocacy Day at the Capitol posttest (n = 14). Survey data revealed that youths' attitude toward advocacy, intentions to advocate, and advocacy behaviors all improved over the intervention. Observations, interviews, a focus group, and other written evaluations identified that the youths', as well as their mentors' and advocacy coaches', confidence, communities' capacity, and mutually beneficial mentorship strengthened. Stronger public speaking skills, communication among the teams, and other recommendations for future advocacy interventions are described. © 2015 Society for Public Health Education.

The Impact of Legal Advocacy Strategies to Advance Roma Health: The Case of Macedonia.

PubMed

Abdikeeva, Alphia; Covaci, Alina

2017-12-01

Across Europe, Roma face exclusion and obstacles in access to health services, resulting in poorer health. While there are legal and policy frameworks for Roma inclusion, implementation often lags behind. Increasing the grassroots capacity of Roma to advocate for accountability in health care and against systemic impediments has been a central focus of Open Society Foundations (OSF) support. This analysis discusses the impact of an OSF-supported legal advocacy project on Roma health rights in Macedonia. The paper uses qualitative indicators to measure the capacity of nongovernmental organizations, accountability for violations, changes in law and practice, and impact on communities. The methodology for assessing the impact of legal advocacy was developed over the course of OSF's legal advocacy project and used to calculate the baseline and conduct the follow-up assessment to track progress across four strategies: legal empowerment, documentation and advocacy, media advocacy, and strategic litigation. Results show that legal advocacy has led to a notable increase in Roma awareness of their health rights. The number of lawsuits has risen dramatically, and cases are increasingly more sophisticated. Although accountability in health care is still the exception rather than the rule, blatant violations have been reduced. Some structural barriers have also been tackled. At the same time, new challenges require continuous and adaptable legal advocacy.

The Impact of Legal Advocacy Strategies to Advance Roma Health

PubMed Central

Covaci, Alina

2017-01-01

Abstract Across Europe, Roma face exclusion and obstacles in access to health services, resulting in poorer health. While there are legal and policy frameworks for Roma inclusion, implementation often lags behind. Increasing the grassroots capacity of Roma to advocate for accountability in health care and against systemic impediments has been a central focus of Open Society Foundations (OSF) support. This analysis discusses the impact of an OSF-supported legal advocacy project on Roma health rights in Macedonia. The paper uses qualitative indicators to measure the capacity of nongovernmental organizations, accountability for violations, changes in law and practice, and impact on communities. The methodology for assessing the impact of legal advocacy was developed over the course of OSF’s legal advocacy project and used to calculate the baseline and conduct the follow-up assessment to track progress across four strategies: legal empowerment, documentation and advocacy, media advocacy, and strategic litigation. Results show that legal advocacy has led to a notable increase in Roma awareness of their health rights. The number of lawsuits has risen dramatically, and cases are increasingly more sophisticated. Although accountability in health care is still the exception rather than the rule, blatant violations have been reduced. Some structural barriers have also been tackled. At the same time, new challenges require continuous and adaptable legal advocacy. PMID:29302166

Conflict of roles: a conflict of ideas? The unsettled relations between care team staff and independent mental health advocates.

PubMed

McKeown, Mick; Ridley, Julie; Newbigging, Karen; Machin, Karen; Poursanidou, Konstantina; Cruse, Kaaren

2014-10-01

Drawing on a national study of independent mental health advocacy, we explored the social relations of independent advocacy. The study was commissioned by the Department of Health (England), and involved a case study design covering eight different geographies and service configurations, and interviews or focus groups with a total of 289 stakeholders across two phases of inquiry. This paper focused on the analysis of qualitative data relevant to the relationship between mental health-care services and independent advocacy services, drawn from interviews with 214 participants in phase two of the study. Discussion of these particular findings affords insights into the working relations of independent advocacy within mental health services beset by reorganizational change and funding cuts, and increasing levels of legally-sanctioned compulsion and coercion. We offer a matrix, which accounts for the different types of working relationships that can arise, and how these are associated with various levels of understanding of independent advocacy and appreciation for the value of advocacy. The discussion is framed by the wider literature on advocacy and the claims by practitioners, such as nurses, for an advocacy role as part of their professional repertoire. © 2014 Australian College of Mental Health Nurses Inc.

Seniors' perspectives on care: a case study of the Alex Seniors health clinic, Calgary.

PubMed

Shaw, Marta; Rypien, Candace; Drummond, Neil; Harasym, Patricia; Nixon, Lara

2015-02-25

Primary care initiatives face an imperative to not only reduce barriers to care for their patients but also to uniquely accommodate the complex needs of at-risk patient populations. Patient-centered multidisciplinary care team models for primary care, like the Alex Seniors Clinic, are one approach for providing comprehensive care for marginalized seniors. The purpose of this qualitative study was to explore patient perspectives on the responsiveness of the Alex Seniors Clinic to their stated health needs. Themes reflected participants' perspectives on factors impacting their health needs as vulnerable seniors as well as on the measures that the Alex Seniors Clinic has taken to meet those needs. Factors impacting health included: the nature of their relationships to the physical environment in which they lived, the nature of the relationships they had to others in that environment, and independence and autonomy. Participants identified accessibility, respect and support, and advocacy as the ways in which the clinic was working to address those health needs. While respect and support, as well as advocacy, effectively addressed some patient needs, participants felt that accessibility problems continue to be health-related barriers for clinic patients. This may be due to the fact that issues of accessibility reflect larger community and social problems. Nevertheless, it is only through engaging the patient community for input on clinic approaches that an understanding can be gained of how closely a clinic's care goals are currently aligning with patient perspectives of the care and services they receive.

Ability of HIV Advocacy to Modify Behavioral Norms and Treatment Impact: A Systematic Review.

PubMed

Sunguya, Bruno F; Munisamy, Murallitharan; Pongpanich, Sathirakorn; Yasuoka, Junko; Jimba, Masamine

2016-08-01

HIV advocacy programs are partly responsible for the global community's success in reducing the burden of HIV. The rising wave of the global burden of noncommunicable diseases (NCDs) has prompted the World Health Organization to espouse NCD advocacy efforts as a possible preventive strategy. HIV and NCDs share some similarities in their chronicity and risky behaviors, which are their associated etiology. Therefore, pooled evidence on the effectiveness of HIV advocacy programs and ideas shared could be replicated and applied during the conceptualization of NCD advocacy programs. Such evidence, however, has not been systematically reviewed to address the effectiveness of HIV advocacy programs, particularly programs that aimed at changing public behaviors deemed as risk factors. To determine the effectiveness of HIV advocacy programs and draw lessons from those that are effective to strengthen future noncommunicable disease advocacy programs. We searched for evidence regarding the effectiveness of HIV advocacy programs in medical databases: PubMed, The Cumulative Index to Nursing and Allied Health Literature Plus, Educational Resources and Information Center, and Web of Science, with articles dated from 1994 to 2014. Search criteria. The review protocol was registered before this review. The inclusion criteria were studies on advocacy programs or interventions. We selected studies with the following designs: randomized controlled design studies, pre-post intervention studies, cohorts and other longitudinal studies, quasi-experimental design studies, and cross-sectional studies that reported changes in outcome variables of interest following advocacy programs. We constructed Boolean search terms and used them in PubMed as well as other databases, in line with a population, intervention, comparator, and outcome question. The flow of evidence search and reporting followed the standard Preferred Reporting Items for Systematic Reviews and Meta-analyses guidelines. We selected 2 outcome variables (i.e., changing social norms and a change in impact) out of 6 key outcomes of advocacy interventions. We assessed the risk of bias for all selected studies by using the Cochrane risk-of-bias tool for randomized studies and using the Risk of Bias for Nonrandomized Observational Studies for observational studies. We did not grade the collective quality of evidence because of differences between the studies, with regard to methods, study designs, and context. Moreover, we could not carry out meta-analyses because of heterogeneity and the diverse study designs; thus, we used a narrative synthesis to report the findings. A total of 25 studies were eligible, of the 1463 studies retrieved from selected databases. Twenty-two of the studies indicated a shift in social norms as a result of HIV advocacy programs, and 3 indicated a change in impact. We drew 6 lessons from these programs that may be useful for noncommunicable disease advocacy: (1) involving at-risk populations in advocacy programs, (2) working with laypersons and community members, (3) working with peer advocates and activists, (4) targeting specific age groups and asking support from celebrities, (5) targeting several, but specific, risk factors, and (6) using an evidence-based approach through formative research. Author conclusions. HIV advocacy programs have been effective in shifting social norms and facilitating a change in impact. The lessons learned from these effective programs could be used to improve the design and implementation of future noncommunicable disease advocacy programs.

Genetics Home Reference: pseudoachondroplasia

MedlinePlus

... of Kansas Medical Center Patient Support and Advocacy Resources (4 links) Human Growth Foundation Little People of America National Organization ... Reviewed : January 2013 Published : June 26, 2018 The resources on this site should not be used as a substitute ... Department of Health & Human Services National Institutes of Health National Library of ...

Nonulcer dyspepsia.

PubMed

Scolapio, J S; Camilleri, M

1996-03-01

There is considerable confusion in the literature about the entity of nonulcer dyspepsia and its epidemiology, mechanisms, and management. In this review, we discuss the mechanisms and develop a strategy for diagnosis and management of nonulcer dyspepsia in the era of cost-containment. This analysis was based on a computerized literature search on epidemiology, pathophysiology, and management of nonulcer dyspepsia. Inconsistencies in the inclusion criteria of several studies result in disparities in the data from epidemiological and physiology-based studies. We propose that the inclusion criteria need to be unrestricted by the symptom of "pain," and that epidemiological features must be refined further because recent data used pain/discomfort as the dominant feature for identifying "dyspepsia." The interplay between three factors (impaired motor and sensory functions, psychosocial factors, and Helicobacter pylori infection) deserves further study. Advances in this field will follow rigorous reappraisal of the epidemiology using an unrestricted definition of the symptom complex and development of strategies in clinical practice that focus on either the cost-effective investigation of the mechanism and its treatment or an effective sequence of therapeutic trials. An algorithm proposed for patient evaluation needs to be tested, with emphasis on outcome (i.e., symptom control, cost efficacy, and societal costs).

Social Justice and Advocacy for Transgender and Gender-Diverse Clients.

PubMed

Dickey, Lore M; Singh, Anneliese A

2017-03-01

This article explores the role of mental health providers and advocacy for transgender people. It begins with a history of the mental health provider's relationship with transgender and gender-diverse people. The article explores the ways that major mental health professional organizations have called for providers to serve in advocacy roles. The article ends with recommendations about how to serve in an advocacy role. Copyright © 2016 Elsevier Inc. All rights reserved.

Ethnic Differences for Public Health Knowledge, Health Advocacy Skills, and Health Information Seeking Among High School Students: Community Agents of Change.

PubMed

Kratzke, Cynthia; Rao, Satya; Marquez, Ruben

2018-03-06

Although adult health advocacy programs have been examined in communities, little is known about integrated adolescent health advocacy programs in high schools. The purpose of this study was to examine the health advocacy program impact and ethnic differences among high school students. Using a cross-sectional study, high school students participating in the school-based program completed evaluation surveys. The program domains included upstream causes of health, community assets, and public health advocacy. Bivariate analyses were conducted to examine ethnic differences for public health knowledge, health advocacy skills, and health information seeking behaviors. Using thematic analysis, open-ended survey item responses were coded to identify themes for students' perceptions of community health. Non-Hispanic (n = 72) and Hispanic high school students (n = 182) in ten classes reported owning smartphones (95%) and laptops (76%). Most students (72%) reported seeking online health information. Non-Hispanic students reported significantly higher health advocacy skills for speaking with the class about health issues, identifying community services, or creating health awareness at school than Hispanic students. Non-Hispanic students were more likely to seek health information from fathers and television than Hispanic students. Hispanic students were more likely to seek health information from hospital or clinic staff than non-Hispanic students. Emergent themes included health advocacy skills, community awareness, and individual and community health changes. High schools benefit from integrating health advocacy programs into the core curriculum. Adolescents gain important skills to improve their individual health and engage in changing community health.

The principles and practices of nutrition advocacy: evidence, experience and the way forward for stunting reduction.

PubMed

Pelletier, David; Haider, Rukhsana; Hajeebhoy, Nemat; Mangasaryan, Nune; Mwadime, Robert; Sarkar, Satyajit

2013-09-01

Advocacy represents an intervention into complex, dynamic and highly contextual socio-political systems, in which strategies and tactics must be adjusted on a continual basis in light of rapidly changing conditions, reactions from actors and feedback. For this reason, the practice of advocacy is often considered more art than science. However, capacities and practices for advocacy can be strengthened by sharing and analysing experiences in varying contexts, deriving general principles and learning to adapt these principles to new contexts. Nutrition is a particular context for advocacy, but to date, there has been little systematic analysis of experiences. The purpose of this paper is to illustrate and draw lessons from the practice of nutrition advocacy, especially in relation to stunting and complementary feeding, and suggest ways to strengthen capacities and practices in the future. The strategies and tactics, achievements and lessons learnt are described for three case studies: Uganda, Vietnam and Bangladesh. These cases, and experience from elsewhere, demonstrate that concerted, well-planned and well-implemented advocacy can bring significant achievements, even in short period of time. In light of the global and national attention being given to stunting reduction through the SUN (Scaling Up Nutrition) movement and other initiatives, there is now a need for much stronger investments in strategic and operational capacities for advocacy, including the human, organisational and financial resources for the advocacy and strategic communication themselves, as well as for monitoring and evaluation, supportive research and institutional capacity-building. © 2013 John Wiley & Sons Ltd.

Outcomes of Open Dorsal Wrist Ganglion Excision in Active-Duty Military Personnel.

PubMed

Balazs, George C; Donohue, Michael A; Drake, Matthew L; Ipsen, Derek; Nanos, George P; Tintle, Scott M

2015-09-01

To examine the most common presenting complaints of active-duty service members with isolated dorsal wrist ganglions and to determine the rate of return to unrestricted duty after open excision. Surgical records at 2 military facilities were screened to identify male and female active duty service members undergoing isolated open excision of dorsal wrist ganglions from January 1, 2006 to January 1, 2014. Electronic medical records and service disability databases were searched to identify the most common presenting symptoms and to determine whether patients returned to unrestricted active duty after surgery. Postoperative outcomes examined were pain persisting greater than 4 weeks after surgery, stiffness requiring formal occupational therapy treatment, surgical wound complications, and recurrence. A total of 125 active duty military personnel (Army, 54; Navy, 43; and Marine Corps, 28) met criteria for inclusion. Mean follow-up was 45 months. Fifteen percent (8 of 54) of the Army personnel were given permanent waivers from performing push-ups owing to persistent pain and stiffness. Pain persisting greater than 4 weeks after surgery was an independent predictor of eventual need for a permanent push-up waiver. The overall recurrence incidence was 9%. No demographic or perioperative factors were associated with recurrence. Patients whose occupation or activities require forceful wrist extension should be counseled on the considerable risk of residual pain and functional limitations that may occur after open dorsal wrist ganglion excision. Therapeutic IV. Published by Elsevier Inc.

Off the Charts: Medical documentation and selective redaction in the age of transparency.

PubMed

McCarthy, Matthew William; de Asua, Diego Real; Gabbay, Ezra; Fins, Joseph J

2018-01-01

A growing demand for transparency in medicine has the potential to strain the doctor-patient relationship. While information can empower patients, unrestricted patient access to the electronic medical record may have unintended consequences. Medical documentation is often written in language that is inaccessible to people without medical training, and without guidance, patients have no way to interpret the constellation of acronyms, diagnoses, treatments, impressions, and arguments that appear throughout their own chart. Additionally, full transparency may not allow physicians the intellectual or clinical freedom they need to authentically express questions, problematic impressions, and concerns about the patient's clinical and psychosocial issues. This article examines the ethical challenges of transparency in the digital era and suggests that selective redaction may serve as a means to maintain transparency, affirm physician's discretion, and uphold the core values of the doctor-patient relationship amidst disruptive technological change.

A community-engaged approach to quantifying caregiver preferences for the benefits and risks of emerging therapies for Duchenne muscular dystrophy.

PubMed

Peay, Holly L; Hollin, Ilene; Fischer, Ryan; Bridges, John F P

2014-05-01

There is growing agreement that regulators performing benefit-risk evaluations should take patients' and caregivers' preferences into consideration. The Patient-Focused Drug Development Initiative at the US Food and Drug Administration offers patients and caregivers an enhanced opportunity to contribute to regulatory processes by offering direct testimonials. This process may be advanced by providing scientific evidence regarding treatment preferences through engagement of a broad community of patients and caregivers. In this article, we demonstrate a community-engaged approach to measure caregiver preferences for potential benefits and risks of emerging therapies for Duchenne muscular dystrophy (DMD). An advocacy oversight team led the community-engaged study. Caregivers' treatment preferences were measured by using best-worst scaling (BWS). Six relevant and understandable attributes describing potential benefits and risks of emerging DMD therapies were identified through engagement with advocates (n = 5), clinicians (n = 9), drug developers from pharmaceutical companies and academic centers (n = 11), and other stakeholders (n = 5). The attributes, each defined across 3 levels, included muscle function, life span, knowledge about the drug, nausea, risk of bleeds, and risk of arrhythmia. Cognitive interviewing with caregivers (n = 7) was used to refine terminology and assess acceptability of the BWS instrument. The study was implemented through an online survey of DMD caregivers, who were recruited in the United States through an advocacy group and snowball sampling. Caregivers were presented with 18 treatment profiles, identified via a main-effect orthogonal experimental design, in which the dependent variable was the respondents' judgment as to the best and worst feature in each profile. Preference weights were estimated by calculating the relative number of times a feature was chosen as best and as worst, which were then used to estimate relative attribute importance. A total of 119 DMD caregivers completed the BWS instrument; they were predominately biological mothers (67.2%), married (89.9%), and white (91.6%). Treatment effect on muscle function was the most important among experimental attributes (28.7%), followed by risk of heart arrhythmia (22.4%) and risk of bleeding (21.2%). Having additional postapproval data was relatively the least important attribute (2.3%). We present a model process for advocacy organizations aiming to promote patient-centered drug development. The community-engaged approach was successfully used to develop and implement a survey to measure caregiver preferences. Caregivers were willing to accept a serious risk when balanced with a noncurative treatment, even absent improvement in life span. These preferences should inform the Food and Drug Administration's benefit-risk assessment of emerging DMD therapies. This study highlights the synergistic integration of traditional advocacy methods and scientific approach to quantify benefit-risk preferences. Copyright © 2014 The Authors. Published by EM Inc USA.. All rights reserved.

Primary Immune Deficiency Treatment Consortium (PIDTC) report.

PubMed

Griffith, Linda M; Cowan, Morton J; Notarangelo, Luigi D; Kohn, Donald B; Puck, Jennifer M; Pai, Sung-Yun; Ballard, Barbara; Bauer, Sarah C; Bleesing, Jack J H; Boyle, Marcia; Brower, Amy; Buckley, Rebecca H; van der Burg, Mirjam; Burroughs, Lauri M; Candotti, Fabio; Cant, Andrew J; Chatila, Talal; Cunningham-Rundles, Charlotte; Dinauer, Mary C; Dvorak, Christopher C; Filipovich, Alexandra H; Fleisher, Thomas A; Bobby Gaspar, Hubert; Gungor, Tayfun; Haddad, Elie; Hovermale, Emily; Huang, Faith; Hurley, Alan; Hurley, Mary; Iyengar, Sumathi; Kang, Elizabeth M; Logan, Brent R; Long-Boyle, Janel R; Malech, Harry L; McGhee, Sean A; Modell, Fred; Modell, Vicki; Ochs, Hans D; O'Reilly, Richard J; Parkman, Robertson; Rawlings, David J; Routes, John M; Shearer, William T; Small, Trudy N; Smith, Heather; Sullivan, Kathleen E; Szabolcs, Paul; Thrasher, Adrian; Torgerson, Troy R; Veys, Paul; Weinberg, Kenneth; Zuniga-Pflucker, Juan Carlos

2014-02-01

The Primary Immune Deficiency Treatment Consortium (PIDTC) is a network of 33 centers in North America that study the treatment of rare and severe primary immunodeficiency diseases. Current protocols address the natural history of patients treated for severe combined immunodeficiency (SCID), Wiskott-Aldrich syndrome, and chronic granulomatous disease through retrospective, prospective, and cross-sectional studies. The PIDTC additionally seeks to encourage training of junior investigators, establish partnerships with European and other International colleagues, work with patient advocacy groups to promote community awareness, and conduct pilot demonstration projects. Future goals include the conduct of prospective treatment studies to determine optimal therapies for primary immunodeficiency diseases. To date, the PIDTC has funded 2 pilot projects: newborn screening for SCID in Navajo Native Americans and B-cell reconstitution in patients with SCID after hematopoietic stem cell transplantation. Ten junior investigators have received grant awards. The PIDTC Annual Scientific Workshop has brought together consortium members, outside speakers, patient advocacy groups, and young investigators and trainees to report progress of the protocols and discuss common interests and goals, including new scientific developments and future directions of clinical research. Here we report the progress of the PIDTC to date, highlights of the first 2 PIDTC workshops, and consideration of future consortium objectives. Published by Mosby, Inc.

The melanoma research alliance: the power of patient advocacy to accelerate research and novel therapies.

PubMed

Black, Debra; Brockway-Lunardi, Laura

2013-12-01

Patient advocacy organizations play a major role in accelerating research and are particularly important in a disease like melanoma, for which there is an urgent need for new tools and treatments. Melanoma is a growing public health burden. In the United States alone, the incidence of melanoma has tripled over the past 30 years, and one American dies every hour from the disease. To accelerate the field, the Melanoma Research Alliance (MRA) was founded in 2007 and is now the largest private funder of melanoma research, having invested more than $48 million in innovative and translational research projects worldwide to date. This investment is bearing fruit in the recent transformation of the melanoma clinical landscape, which has brought new hope to patients and their families. Yet, even with new drugs on the market, much more needs to be done until melanoma is effectively addressed. MRA is part of a growing group of nonprofit disease research foundations collectively called "venture philanthropies" that are playing a powerful role in transforming the outlook for their disease by overcoming barriers that bog down progress, targeting key areas, and enhancing collaboration. MRA is leading an innovative agenda to accelerate efforts on behalf of patients. Our goal, while significant, is straightforward: to end suffering and death due to melanoma. ©2013 AACR.

75 FR 77647 - Medical Device User Fee Program; Meetings on Reauthorization; Request for Notification of Patient...

Federal Register 2010, 2011, 2012, 2013, 2014

2010-12-13

... consumer advocacy groups at least monthly during FDA's negotiations with the regulated industry. The... reauthorization negotiations with the regulated industry. ADDRESSES: Submit notification of intention to... groups at least once every month during negotiations with the regulated industry to continue discussions...

NCI-CONNECT - Comprehensive Oncology Network Evaluating Rare CNS Tumors | Center for Cancer Research

Cancer.gov

NCI-CONNECT:  Comprehensive Oncology Network Evaluating Rare CNS Tumors Purpose NCI-CONNECT aims to advance the understanding of rare adult central nervous system (CNS) cancers by establishing and fostering patient-advocacy-provider partnerships and networks to improve approaches to care and treatment.

Genetics Home Reference: isolated growth hormone deficiency

MedlinePlus

... hormone deficiency type III Patient Support and Advocacy Resources (3 links) Human Growth Foundation Little People UK The MAGIC Foundation ... Reviewed : February 2012 Published : June 26, 2018 The resources on this site should not be used as a substitute ... Department of Health & Human Services National Institutes of Health National Library of ...

Gay-Straight Alliances vary on dimensions of youth socializing and advocacy: factors accounting for individual and setting-level differences.

PubMed

Poteat, V Paul; Scheer, Jillian R; Marx, Robert A; Calzo, Jerel P; Yoshikawa, Hirokazu

2015-06-01

Gay-Straight Alliances (GSAs) are school-based youth settings that could promote health. Yet, GSAs have been treated as homogenous without attention to variability in how they operate or to how youth are involved in different capacities. Using a systems perspective, we considered two primary dimensions along which GSAs function to promote health: providing socializing and advocacy opportunities. Among 448 students in 48 GSAs who attended six regional conferences in Massachusetts (59.8 % LGBQ; 69.9 % White; 70.1 % cisgender female), we found substantial variation among GSAs and youth in levels of socializing and advocacy. GSAs were more distinct from one another on advocacy than socializing. Using multilevel modeling, we identified group and individual factors accounting for this variability. In the socializing model, youth and GSAs that did more socializing activities did more advocacy. In the advocacy model, youth who were more actively engaged in the GSA as well as GSAs whose youth collectively perceived greater school hostility and reported greater social justice efficacy did more advocacy. Findings suggest potential reasons why GSAs vary in how they function in ways ranging from internal provisions of support, to visibility raising, to collective social change. The findings are further relevant for settings supporting youth from other marginalized backgrounds and that include advocacy in their mission.

Gay-Straight Alliances Vary on Dimensions of Youth Socializing and Advocacy: Factors Accounting for Individual and Setting-Level Differences

PubMed Central

Poteat, V. Paul; Scheer, Jillian R.; Marx, Robert A.; Calzo, Jerel P.; Yoshikawa, Hiro

2016-01-01

Gay-Straight Alliances (GSAs) are school-based youth settings that could promote health. Yet, GSAs have been treated as homogenous without attention to variability in how they operate or to how youth are involved in different capacities. Using a systems perspective, we considered two primary dimensions along which GSAs function to promote health: providing socializing and advocacy opportunities. Among 448 students in 48 GSAs who attended six regional conferences in Massachusetts (59.8% LGBQ; 69.9% White; 70.1% cisgender female), we found substantial variation among GSAs and youth in levels of socializing and advocacy. GSAs were more distinct from one another on advocacy than socializing. Using multilevel modeling, we identified group and individual factors accounting for this variability. In the socializing model, youth and GSAs that did more socializing activities did more advocacy. In the advocacy model, youth who were more actively engaged in the GSA as well as GSAs whose youth collectively perceived greater school hostility and reported greater social justice efficacy did more advocacy. Findings suggest potential reasons why GSAs vary in how they function in ways ranging from internal provisions of support, to visibility raising, to collective social change. The findings are further relevant for settings supporting youth from other marginalized backgrounds and that include advocacy in their mission. PMID:25855133

Ethics in perioperative practice--patient advocacy.

PubMed

Schroeter, Kathryn

2002-05-01

Though often difficult, ethical decision making is necessary when caring for surgical patients. Perioperative nurses have to recognize ethical dilemmas and be prepared to take action based on the ethical code outlined in the American Nurses Association's (ANA's) Code of Ethics for Nurses with Interpretive Statements. In this second of a nine-part series that will help perioperative nurses relate the ANA code to their own area of practice, the author looks at the third provision statement, which addresses nurses' position as patient advocates.

Exploring the relationship between self-awareness of driving efficacy and that of a proxy when determining fitness to drive after stroke.

PubMed

Stapleton, Tadhg; Connolly, Deirdre; O'Neill, Desmond

2012-02-01

The inclusion of a driving specific self-awareness measure may assist the clinical screening process to determine fitness to drive after stroke. This article reports on the use of the Adelaide Driving Self-Efficacy Scale (ADSES) and a proxy ADSES for completion by a significant other in assessment of fitness to drive post-stroke. A prospective study among a clinical sample of stroke patients was conducted incorporating an off-road occupational therapy assessment, an on-road assessment and a six-month follow-up. Self and proxy driver efficacy ratings were compared with each other at off-road assessment and at six-month follow-up, both ratings were compared with structured on-road ratings of driving performance. Forty-six stroke patients (37 men), mean age 63.5 years, were recruited to the study. Thirty-five participants successfully completed the on-road test. ADSES and proxy ratings were high and a ceiling effect was noted. Self and proxy ratings were significantly correlated with each other and both correlated with the on-road assessment ratings. The ADSES ratings were sensitive to the final driving outcome with scores of the restricted driving group significantly lower than the unrestricted group. Proxy ratings showed a decrease at six-month follow-up. The ADSES is an easy to administer tool that warrants further use in stroke rehabilitation. Scores on the ADSES differentiated between restricted and unrestricted driving recommendations post-stroke. These preliminary findings indicate its potential use as a proxy measure to assist in identifying patient who are not ready for formal driving assessment. © 2011 The Authors. Australian Occupational Therapy Journal © 2011 Occupational Therapy Australia.

Transtelephonic home blood pressure to assess the monoamine oxidase-B inhibitor rasagiline in Parkinson disease.

PubMed

White, William B; Salzman, Phyllis; Schwid, Steven R

2008-09-01

Monoamine oxidase inhibitors are associated with dietary tyramine interactions that can induce hypertensive crises. Rasagiline mesylate is a novel irreversible selective monoamine oxidase type B inhibitor for Parkinson disease that may have a low risk of interaction with dietary tyramine because of its selectivity. To study interactions of rasagiline with diets unrestricted in tyramine-containing foods, we incorporated transtelephonic, self-monitoring of the blood pressure (BP) into a randomized, placebo-controlled trial of rasagiline 0.5 and 1.0 mg daily in 414 levodopa-treated Parkinson patients with motor fluctuations. The proportion of patients with a systolic BP increase of >30 mm Hg was the primary BP end point. In 13 968 self-measured readings at baseline, the proportion of systolic BP values that increased by >30 mm Hg after a meal ranged from 9.5% to 12.9% in the 3 treatment groups. In 25 733 BPs obtained postrandomization, the proportion of values with a >30-mm Hg systolic postprandial increase was 15% in the placebo group, 15% in the rasagiline 0.5-mg group, and 11% in the rasagiline 1-mg group after 3 weeks of double-blind therapy and 13%, 14%, and 12%, respectively, after 26 weeks of treatment (P value was not significant for all of the comparisons among treatment groups). A postprandial increase in systolic BP to >180 mm Hg at any time after randomization was seen in 3.3%, 2.6%, and 2.9% of the placebo, 0.5-mg, and 1.0-mg rasagiline groups, respectively. These data demonstrate that rasagiline did not induce postprandial hypertension in patients with Parkinson disease who were on an unrestricted diet.

Assessing and Mobilizing Faith Organizations to Implement Childhood Obesity Prevention Advocacy Strategies.

PubMed

Bozlak, Christine T; Kenady, James M; Becker, Adam B

2018-01-01

Childhood obesity remains a public health problem requiring mobilization across diverse social and political sectors. The faith-based sector can contribute to obesity prevention advocacy when existing resources are supported and leveraged. This article describes an advocacy resource assessment conducted in six Chicago faith organizations. Key administrators and congregation members were surveyed to identify organizational resources that could be mobilized for childhood obesity prevention advocacy. Survey data were analyzed using SPSS and Excel. Descriptive statistics were calculated for each organization and for all combined. Organizational resources for advocacy were identified, with varying degrees of resources within organizations. Congregation members and faith leaders expressed interest in advocacy training and activities but acknowledged competing organizational priorities. Participating organizations received a stipend to pursue recommended action items based on their assessment. Faith organizations have unique resources and human capital and can be key partners in childhood obesity prevention. Conducting an assessment prior to planning interventions and advocacy approaches can strengthen partnerships, leverage assets among partners, and ensure efforts are relevant and beneficial for faith organizations. It may also be strategic to incorporate funding in grant budgets in order to empower faith organizations to act on findings from the assessment process.

75 FR 7539 - Open Meeting of the Area 4 Taxpayer Advocacy Panel (Including the States of Illinois, Indiana...

Federal Register 2010, 2011, 2012, 2013, 2014

2010-02-19

...An open meeting of the Area 4 Taxpayer Advocacy Panel will be conducted. The Taxpayer Advocacy Panel is soliciting public comments, ideas, and suggestions on improving customer service at the Internal Revenue Service.

Facts and figures about patient associations in the Netherlands between 2007 and 2009: review of their activities and aims.

PubMed

Kamphuis, Helen C; Kamphuis, Helen; Hekkert, Karin D; Hekkert, Karin; van Dongen, Marie-Christine; Kool, Rudolf B; Kool, Tijn

2012-10-01

To facilitate empowerment, the government encourages patient associations to participate in policy making discussions. To play a crucial role as one of the partners for the government in formulating policy on healthcare, information was needed about the activities and aims of Dutch patient associations. This article describes the development of the monitor in 2005 and 2006 and the most important outcomes and trends for 2007, 2008 and 2009. Seven years ago, a yearly monitor of patient associations was started to quantify the activities of the patient and consumer movement in the Netherlands. We analyze individual Dutch patient associations focusing on empowerment and advocacy for their own members. Different types of associations pursue different goals to provide a 'voice' for their members. There was a very slight decline in individual members when comparing 2007 and 2009. More than a third of all associations have professional, paid employees. Organizations for disabled or mental disorders have the most volunteers. Peer support meetings for their own members remain the most popular activities. There are many small organizations and a few big ones. Advocacy remains important although the motives differ between patient associations. Dutch patient organizations reported activities they are expected to perform. They try to reduce information asymmetry by informing patients better through several media. They also provide peer support groups to their members. They reach the general public through their social media activities. Their primary focus is providing services to their members. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

AYA in the USA. International Perspectives on AYAO, Part 5

PubMed Central

2013-01-01

Within the past decade, the discipline of adolescent and young adult (AYA) oncology has taken root in the United States. It arose from the observation that survival improvements for 15–39-year-olds have lagged behind those of both children and older adults. Rapid progress in this new area has resulted from energetic work by researchers, clinicians, and non-profit organizations focusing on AYA-aged cancer patients and survivors. The term “AYA” is now well recognized within both pediatric and medical oncology, and AYA-specific aims are increasingly included in clinical trials and also basic and translational oncology research. The AYA oncology movement in the United States was spearheaded by the LIVESTRONG Young Adult Alliance (the Alliance), a coalition of AYA-focused non-profit organizations and academic institutions that has recently transitioned into a successor organization—Critical Mass: The Young Adult Cancer Alliance, composed of individual AYAO professionals. The work of groups such as the Alliance/Critical Mass and key collaborators—including the National Cancer Institute, National Comprehensive Cancer Network, Children's Oncology Group, and advocacy organizations—provides a useful platform for the discussion of progress in AYA oncology in the United States, including advances in (1) research and tool development; (2) public and professional education; (3) advocacy and patient support; (4) awareness; and (5) service delivery. AYA oncology programs are now burgeoning dramatically throughout the United States, and many well-established U.S. programs share distinctive features in clinical programming. The United States is now entering an era of larger-scale coordinated efforts in research, advocacy, and clinical care for AYAs with cancer. PMID:24380035

AYA in the USA. International Perspectives on AYAO, Part 5.

PubMed

Johnson, Rebecca H

2013-12-01

Within the past decade, the discipline of adolescent and young adult (AYA) oncology has taken root in the United States. It arose from the observation that survival improvements for 15-39-year-olds have lagged behind those of both children and older adults. Rapid progress in this new area has resulted from energetic work by researchers, clinicians, and non-profit organizations focusing on AYA-aged cancer patients and survivors. The term "AYA" is now well recognized within both pediatric and medical oncology, and AYA-specific aims are increasingly included in clinical trials and also basic and translational oncology research. The AYA oncology movement in the United States was spearheaded by the LIVESTRONG Young Adult Alliance (the Alliance), a coalition of AYA-focused non-profit organizations and academic institutions that has recently transitioned into a successor organization-Critical Mass: The Young Adult Cancer Alliance, composed of individual AYAO professionals. The work of groups such as the Alliance/Critical Mass and key collaborators-including the National Cancer Institute, National Comprehensive Cancer Network, Children's Oncology Group, and advocacy organizations-provides a useful platform for the discussion of progress in AYA oncology in the United States, including advances in (1) research and tool development; (2) public and professional education; (3) advocacy and patient support; (4) awareness; and (5) service delivery. AYA oncology programs are now burgeoning dramatically throughout the United States, and many well-established U.S. programs share distinctive features in clinical programming. The United States is now entering an era of larger-scale coordinated efforts in research, advocacy, and clinical care for AYAs with cancer.

Planning for the next generation of public health advocates: evaluation of an online advocacy mentoring program.

PubMed

O'Connell, Emily; Stoneham, Melissa; Saunders, Julie

2016-04-01

Issue addressed Despite being viewed as a core competency for public health professionals, public health advocacy lacks a prominent place in the public health literature and receives minimal coverage in university curricula. The Public Health Advocacy Institute of Western Australia (PHAIWA) sought to fill this gap by establishing an online e-mentoring program for public health professionals to gain knowledge through skill-based activities and engaging in a mentoring relationship with an experienced public health advocate. This study is a qualitative evaluation of the online e-mentoring program. Methods Semi-structured interviews were conducted with program participants at the conclusion of the 12-month program to examine program benefits and determine the perceived contribution of individual program components to overall advocacy outcomes. Results Increased mentee knowledge, skills, level of confidence and experience, and expanded public health networks were reported. Outcomes were dependent on participants' level of commitment, time and location barriers, mentoring relationship quality, adaptability to the online format and the relevance of activities for application to participants' workplace context. Program facilitators had an important role through the provision of timely feedback and maintaining contact with participants. Conclusion An online program that combines public health advocacy content via skill-based activities with mentoring from an experienced public health advocate is a potential strategy to build advocacy capacity in the public health workforce. So what? Integrating advocacy as a core component of professional development programs will help counteract current issues surrounding hesitancy by public health professionals to proactively engage in advocacy, and ensure that high quality, innovative and effective advocacy leadership continues in the Australian public health workforce.

“We Are Not Really Marketing Mental Health”: Mental Health Advocacy in Zimbabwe

PubMed Central

Hendler, Reuben; Kidia, Khameer; Machando, Debra; Crooks, Megan; Mangezi, Walter; Abas, Melanie; Katz, Craig; Thornicroft, Graham; Semrau, Maya

2016-01-01

Introduction Few people with mental disorders in low and middle-income countries (LMICs) receive treatment, in part because mental disorders are highly stigmatized and do not enjoy priority and resources commensurate with their burden on society. Advocacy has been proposed as a means of building political will and community support for mental health and reducing stigma, but few studies have explored the practice and promise of advocacy in LMICs. Methods We conducted 30 semi-structured interviews with leaders in health and mental health in Zimbabwe to explore key stakeholder perceptions on the challenges and opportunities of the country’s mental health system. We coded the transcripts using the constant comparative method, informed by principles of grounded theory. Few interview questions directly concerned advocacy, yet in our analysis, advocacy emerged as a prominent, cross-cutting theme across participants and interview questions. Results Two thirds of the respondents discussed advocacy, often in depth, returning to the concept throughout the interview and emphasizing their belief in advocacy’s importance. Participants described six distinct components of advocacy: the advocates, to whom they advocate (“targets”), what they advocate for (“asks”), how advocates reach their targets (“access”), how they make their asks (“arguments”), and the results of their advocacy (“outcomes”). Discussion Despite their perception that mental health is widely misunderstood and under-appreciated in Zimbabwe, respondents expressed optimism that strategically speaking out can reduce stigma and increase access to care. Key issues included navigating hierarchies, empowering service users to advocate, and integrating mental health with other health initiatives. Understanding stakeholder perceptions sets the stage for targeted development of mental health advocacy in Zimbabwe and other LMICs. PMID:27607240

Factors for success in mental health advocacy

PubMed Central

Hann, Katrina; Pearson, Heather; Campbell, Doris; Sesay, Daniel; Eaton, Julian

2015-01-01

Background Mental health advocacy groups are an effective way of pushing the mental health agenda and putting pressure on national governments to observe the right to health; however, there is limited research that highlights best practices for such groups in low-resource settings. In an effort to improve the scaling up of mental health in Sierra Leone, stakeholders came together to form the country's first mental health advocacy group: the Mental Health Coalition – Sierra Leone. Since its inception, the group has worked towards raising the profile of mental health in Sierra Leone and developing as an advocacy organisation. Design The study's aim was to investigate views on enabling factors and barriers associated with mental health advocacy in a low-income country using a community-based participatory approach and qualitative methodology. Focus groups (N=9) were held with mental health stakeholders, and key informant interviews (N=15) were conducted with advocacy targets. Investigators analysed the data collaboratively using coding techniques informed by grounded theory. Results Investigators reveal viewpoints on key factors in networking, interacting with government actors, and awareness raising that enabled mental health advocacy aims of supporting policy, service delivery, service user rights, training for service delivery, and awareness raising. The investigators outline viewpoints on barriers for advocacy aims in framing the issue of mental health, networking, interacting with government actors, resource mobilization, and awareness raising. Conclusions The findings outline enabling factors, such as networking with key stakeholders, and barriers, such as lack of political will, for achieving mental health advocacy aims within a low-resource setting, Sierra Leone. Stakeholder coalitions can further key policy development aims that are essential to strengthen mental health systems in low-resource settings. PMID:26689456

Factors for success in mental health advocacy.

PubMed

Hann, Katrina; Pearson, Heather; Campbell, Doris; Sesay, Daniel; Eaton, Julian

2015-01-01

Mental health advocacy groups are an effective way of pushing the mental health agenda and putting pressure on national governments to observe the right to health; however, there is limited research that highlights best practices for such groups in low-resource settings. In an effort to improve the scaling up of mental health in Sierra Leone, stakeholders came together to form the country's first mental health advocacy group: the Mental Health Coalition - Sierra Leone. Since its inception, the group has worked towards raising the profile of mental health in Sierra Leone and developing as an advocacy organisation. The study's aim was to investigate views on enabling factors and barriers associated with mental health advocacy in a low-income country using a community-based participatory approach and qualitative methodology. Focus groups (N=9) were held with mental health stakeholders, and key informant interviews (N=15) were conducted with advocacy targets. Investigators analysed the data collaboratively using coding techniques informed by grounded theory. Investigators reveal viewpoints on key factors in networking, interacting with government actors, and awareness raising that enabled mental health advocacy aims of supporting policy, service delivery, service user rights, training for service delivery, and awareness raising. The investigators outline viewpoints on barriers for advocacy aims in framing the issue of mental health, networking, interacting with government actors, resource mobilization, and awareness raising. The findings outline enabling factors, such as networking with key stakeholders, and barriers, such as lack of political will, for achieving mental health advocacy aims within a low-resource setting, Sierra Leone. Stakeholder coalitions can further key policy development aims that are essential to strengthen mental health systems in low-resource settings.

Quantifying vegetation and nekton response to tidal restoration of a New England salt marsh

USGS Publications Warehouse

Roman, C.T.; Raposa, K.B.; Adamowicz, S.C.; James-Pirri, M.J.; Catena, J.G.

2002-01-01

Tidal flow to salt marshes throughout the northeastern United States is often restricted by roads, dikes, impoundments, and inadequately sized culverts or bridge openings, resulting in altered ecological structure and function. In this study we evaluated the response of vegetation and nekton (fishes and decapod crustaceans) to restoration of full tidal flow to a portion of the Sachuest Point salt marsh, Middletown, Rhode Island. A before, after, control, impact study design was used, including evaluations of the tide-restricted marsh, the same marsh after reintroduction of tidal flow (i.e., tide-restored marsh), and an unrestricted control marsh. Before tidal restoration vegetation of the 3.7-ha tide-restricted marsh was dominated by Phragmites australis and was significantly different from the adjacent 6.3-ha Spartina -dominated unrestricted control marsh (analysis of similarities randomization test, p < 0.001). After one growing season vegetation of the tide-restored marsh had changed from its pre-restoration condition (analysis of similarities randomization test, p < 0.005). Although not similar to the unrestricted control marsh, Spartina patens and S. alterniflora abundance increased and abundance and height of Phragmites significantly declined, suggesting a convergence toward typical New England salt marsh vegetation. Before restoration shallow water habitat (creeks and pools) of the unrestricted control marsh supported a greater density of nekton compared with the tide-restricted marsh (analysis of variance, p < 0.001), but after one season of restored tidal flow nekton density was equivalent. A similar trend was documented for nekton species richness. Nekton density and species richness from marsh surface samples were similar between the tide-restored marsh and unrestricted control marsh. Fundulus heteroclitus and Palaemonetes pugio were the numerically dominant fish and decapod species in all sampled habitats. This study provides an example of a quantitative approach for assessing the response of vegetation and nekton to tidal restoration.

Impact of a pregabalin step therapy policy among medicare advantage beneficiaries.

PubMed

Suehs, Brandon T; Louder, Anthony; Udall, Margarita; Cappelleri, Joseph C; Joshi, Ashish V; Patel, Nick C

2014-06-01

Managed healthcare organizations often utilize formulary management strategies such as prior authorization and step therapy to guide appropriate medication use and to control medication expenditures. The objective of this study was to examine clinical and economic outcomes associated with implementation of a pregabalin step therapy (ST) policy among Medicare Advantage Prescription Drug (MAPD) members. Pharmacy and medical claims data from Humana (restricted cohort; ST policy implemented 01/01/2009) and Thomson Reuters MarketScan(®) (unrestricted cohort) were analyzed for MAPD members aged 65 to 89 years receiving treatment for painful diabetic peripheral neuropathy (pDPN), postherpetic neuralgia (PHN) or fibromyalgia (FM). Difference-in-differences (DID) was used to examine year-over-year changes in disease-related and all-cause utilization and costs. Regression analyses examined medication utilization and healthcare expenditures after controlling for between-group compositional differences. We identified 13,911 members in the restricted cohort and matched to members from unrestricted health plans. FM (51.0%) and pDPN (41.8%) were the most common diagnoses. Members in the unrestricted cohort were older and had a greater level of comorbidity than members in the restricted cohort. The restricted cohort demonstrated greater year-over-year decrease in pregabalin utilization and increase in year-over-year gabapentin utilization compared with the unrestricted cohort. ST restriction was associated with an increase in disease-related pharmacy costs and a decrease in total medical costs for the restricted cohort compared with the unrestricted cohort. There was no difference between cohorts in total healthcare cost. After controlling for differences in age and comorbidity burden between the groups, implementation of a pregabalin ST restriction was associated with increased disease-related pharmacy costs and decreased total medical costs; however, there was no net difference in total healthcare cost or total pharmacy cost. © 2013 Pfizer Inc and Humana, Inc. Pain Practice © 2013 World Institute of Pain.

The Role of Cardiovascular Magnetic Resonance Imaging in Heart Failure.

PubMed

Peterzan, Mark A; Rider, Oliver J; Anderson, Lisa J

2016-11-01

Cardiovascular imaging is key for the assessment of patients with heart failure. Today, cardiovascular magnetic resonance imaging plays an established role in the assessment of patients with suspected and confirmed heart failure syndromes, in particular identifying aetiology. Its role in informing prognosis and guiding decisions around therapy are evolving. Key strengths include its accuracy; reproducibility; unrestricted field of view; lack of radiation; multiple abilities to characterise myocardial tissue, thrombus and scar; as well as unparalleled assessment of left and right ventricular volumes. T2* has an established role in the assessment and follow-up of iron overload cardiomyopathy and a role for T1 in specific therapies for cardiac amyloid and Anderson-Fabry disease is emerging.

A state survey of Child Advocacy Center therapists' attitudes toward treatment manuals and evidence-based practice.

PubMed

Staudt, Marlys; Williams-Hayes, Mona

2011-01-01

The objective of this descriptive study was to examine Child Advocacy Center therapists' attitudes toward treatment manuals and evidence-based practices and to gather information about the treatments they use most frequently. An online survey was sent to 30 therapists employed by 15 Child Advocacy Centers in a southeastern state. The response rate was 70%. The respondents generally had positive attitudes toward the use of treatment manuals and the implementation of evidence-based practices. The treatment utilized most frequently was trauma focused cognitive-behavioral therapy. More outcome research of Child Advocacy Center services is needed, and information about how children and parents perceive the acceptability and outcomes of Child Advocacy Center services can be used to enhance services.

Economic and Public Health Impacts of Policies Restricting Access to Hepatitis C Treatment for Medicaid Patients.

PubMed

Chidi, Alexis P; Bryce, Cindy L; Donohue, Julie M; Fine, Michael J; Landsittel, Douglas P; Myaskovsky, Larissa; Rogal, Shari S; Switzer, Galen E; Tsung, Allan; Smith, Kenneth J

2016-06-01

Interferon-free hepatitis C treatment regimens are effective but very costly. The cost-effectiveness, budget, and public health impacts of current Medicaid treatment policies restricting treatment to patients with advanced disease remain unknown. To evaluate the cost-effectiveness of current Medicaid policies restricting hepatitis C treatment to patients with advanced disease compared with a strategy providing unrestricted access to hepatitis C treatment, assess the budget and public health impact of each strategy, and estimate the feasibility and long-term effects of increased access to treatment for patients with hepatitis C. Using a Markov model, we compared two strategies for 45- to 55-year-old Medicaid beneficiaries: 1) Current Practice-only advanced disease is treated before Medicare eligibility and 2) Full Access-both early-stage and advanced disease are treated before Medicare eligibility. Patients could develop progressive fibrosis, cirrhosis, or hepatocellular carcinoma, undergo transplantation, or die each year. Morbidity was reduced after successful treatment. We calculated the incremental cost-effectiveness ratio and compared the costs and public health effects of each strategy from the perspective of Medicare alone as well as the Centers for Medicare & Medicaid Services perspective. We varied model inputs in one-way and probabilistic sensitivity analyses. Full Access was less costly and more effective than Current Practice for all cohorts and perspectives, with differences in cost ranging from $5,369 to $11,960 and in effectiveness from 0.82 to 3.01 quality-adjusted life-years. In a probabilistic sensitivity analysis, Full Access was cost saving in 93% of model iterations. Compared with Current Practice, Full Access averted 5,994 hepatocellular carcinoma cases and 121 liver transplants per 100,000 patients. Current Medicaid policies restricting hepatitis C treatment to patients with advanced disease are more costly and less effective than unrestricted, full-access strategies. Collaboration between state and federal payers may be needed to realize the full public health impact of recent innovations in hepatitis C treatment. Copyright © 2016 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.

Department of the Navy Advocacy Program: Service Heed and Service Response. Phase III Report: Conclusions

DTIC Science & Technology

1983-10-01

child abuse and spouse abuse, and describe the evolvement of military family advocacy programs. By providing a ready resource for briefings and community presentations, these resource papers should be particularly helpful to Navy and Marine Corps family advocacy

76 FR 77892 - Open Meeting of the Taxpayer Advocacy Panel Refund Processing Communications Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2011-12-14

... Refund Processing Communications Project Committee AGENCY: Internal Revenue Service (IRS) Treasury... Communications Project Committee will be conducted. The Taxpayer Advocacy Panel is soliciting public comments... the Taxpayer Advocacy Panel Refund Processing Communications Project Committee will be held Tuesday...

34 CFR 381.3 - What activities may the Secretary fund?

Code of Federal Regulations, 2010 CFR

2010-07-01

... disabilities who are exiting from public school programs. (4) Coordinating the protection and advocacy program... SPECIAL EDUCATION AND REHABILITATIVE SERVICES, DEPARTMENT OF EDUCATION PROTECTION AND ADVOCACY OF... remedies or approaches to ensure the protection of, and advocacy for, the rights of eligible individuals...

Corporate Advocacy Advertising and Political Influence.

ERIC Educational Resources Information Center

Waltzer, Herbert

1988-01-01

Offers an operational definition and typology of advocacy and image advertising as complementary forms of institutional advertising. Examines two of the more important forms of advocacy advertising--paid print editorials appearing on the "op-ed" page of the "New York Times" and the "advertorials" in two principal…

POLICY ADVOCACY IN SCIENCE: PREVALENCE, PERSPECTIVES, AND IMPLICATIONS FOR CONSERVATION BIOLOGISTS

EPA Science Inventory

Much debate and discussion has focused on the relationship between science and advocacy, and the role of scientists in influencing public policy. Some argue that advocacy is widespread within scientific literature, however, data to evaluate that contention are lacking. We examine...

Tobacco control advocacy in Australia: reflections on 30 years of progress.

PubMed

Chapman, S; Wakefield, M

2001-06-01

Australia has one of the world's most successful records on tobacco control. The role of public health advocacy in securing public and political support for tobacco control legislation and policy and program support is widely acknowledged and enshrined in World Health Organization policy documents yet is seldom the subject of analysis in the public health policy research literature. Australian public health advocates tend to not work in settings where evaluation and systematic planning are valued. However, their day-to-day strategies reveal considerable method and grounding in framing theory. The nature of media advocacy is explored, with differences between the conceptualization of routine "programmatic" public health interventions and the modus operandi of media advocacy highlighted. Two case studies on securing smoke-free indoor air and banning all tobacco advertising are used to illustrate advocacy strategies that have been used in Australia. Finally, the argument that advocacy should emanate from communities and be driven by them is considered.

[Single or double moral standards? Professional ethics of psychiatrists regarding self-determination, rights of third parties and involuntary treatment].

PubMed

Pollmächer, T

2015-09-01

The current intensive discussion on the legal and moral aspects of involuntary treatment of psychiatric patients raises a number of ethical issues. Physicians are unambiguously obligated to protect patient welfare and autonomy; however, in psychiatric patients disease-related restrictions in the capacity of self-determination and behaviors endangering the rights of third parties can seriously challenge this unambiguity. Therefore, psychiatry is assumed to have a double function and is also obligated to third parties and to society in general. Acceptance of such a kind of double obligation carries the risk of double moral standards, placing the psychiatrist ethically outside the community of physicians and questioning the unrestricted obligation towards the patient. The present article formulates a moral position, which places the psychiatrist, like all other physicians, exclusively on the side of the patient in terms of professional ethics and discusses the practical problems arising from this moral position.

Chinese Grand Strategy: How Anti-Access/Area Denial (A2/AD) Fits in China’s Plan

DTIC Science & Technology

2014-04-01

Qiao and Wang, Unrestricted Warfare, 142. 6. Corpus, “America’s Acupuncture Points” Asia Times Online, (Part 2, Section 5). 7. Ibid. 8. Stokes...Corpus, “America’s Acupuncture Points”, (Part 1, Section 1). 46. Qiao and Wang, Unrestricted Warfare, 93. 47. Ibid. 48. Military Factory, “American War...Employment Concepts in the 21st Century. RAND Report FA7014-06-C-0001. Santa Monica, CA: RAND, 2011. Corpus, Victor N. “America’s Acupuncture Points

Thinking Out of the Box: A Green and Social Climate Fund Comment on "Politics, Power, Poverty and Global Health: Systems and Frames".

PubMed

Ooms, Gorik; Pas, Remco van de; Decoster, Kristof; Hammonds, Rachel

2016-12-28

Solomon Benatar's paper "Politics, Power, Poverty and Global Health: Systems and Frames" examines the inequitable state of global health challenging readers to extend the discourse on global health beyond conventional boundaries by addressing the interconnectedness of planetary life. Our response explores existing models of international cooperation, assessing how modifying them may achieve the twin goals of ensuring healthy people and planet. First, we address why the inequality reducing post World War II European welfare model, if implemented state-by-state, is unfit for reducing global inequality and respecting environmental boundaries. Second, we argue that to advance beyond the 'Westphalian,' human centric thinking integral to global inequality and climate change requires challenging the logic of global economic integration and exploring the politically infeasible. In conclusion, we propose social policy focused changes to the World Trade Organisation (WTO) and a Green and Social Climate Fund, financed by new global greenhouse gas charges, both of which could advance human and planetary health. Recent global political developments may offer a small window of opportunity for out of the box proposals that could be advanced by concerted and united advocacy by global health activists, environmental activists, human rights activists, and trade unions. © 2017 The Author(s); Published by Kerman University of Medical Sciences. This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Academic advocacy in public health: Disciplinary 'duty' or political 'propaganda'?

PubMed

Smith, K E; Stewart, E A

2017-09-01

The role of 'advocacy' within public health attracts considerable debate but is rarely the subject of empirical research. This paper reviews the available literature and presents data from qualitative research (interviews and focus groups conducted in the UK in 2011-2013) involving 147 professionals (working in academia, the public sector, the third sector and policy settings) concerned with public health in the UK. It seeks to address the following questions: (i) What is public health advocacy and how does it relate to research?; (ii) What role (if any) do professionals concerned with public health feel researchers ought to play in advocacy?; and (iii) For those researchers who do engage in advocacy, what are the risks and challenges and to what extent can these be managed/mitigated? In answering these questions, we argue that two deeply contrasting conceptualisations of 'advocacy' exist within public health, the most dominant of which ('representational') centres on strategies for 'selling' public health goals to decision-makers and the wider public. This contrasts with an alternative (less widely employed) conceptualisation of advocacy as 'facilitational'. This approach focuses on working with communities whose voices are often unheard/ignored in policy to enable their views to contribute to debates. We argue that these divergent ways of thinking about advocacy speak to a more fundamental challenge regarding the role of the public in research, policy and practice and the activities that connect these various strands of public health research. Copyright © 2017 The Authors. Published by Elsevier Ltd.. All rights reserved.

Patient empowerment as a component of health system reforms: rights, benefits and vested interests.

PubMed

Colombo, Cinzia; Moja, Lorenzo; Gonzalez-Lorenzo, Marien; Liberati, Alessandro; Mosconi, Paola

2012-04-01

Different strategies have been developed across countries to foster citizens' and patients' involvement, from health policies to patients' active participation in decisions regarding their health. The spectrum varies from systems where patients lead the reform of health care services, to others where a paternalistic approach still limits patients' autonomy in decision-making. This paper describes: (1) different interventions for involving patients; (2) experiences to promote consumer evidence-based advocacy; and (3) barriers to consumer involvement in health system reforms, including vested interests in patients' associations. Citizens' involvement in health systems can vary substantially, but is gaining increasing weight.

Philosophy + Advocacy = Success

ERIC Educational Resources Information Center

Tutt, Kevin; Townley, Marc

2011-01-01

Knowledge about music advocacy strategies has long been promoted as important for music educators, not only for the benefit of their individual programs but also for the specific benefit of music students and the general public. This article suggests an approach to advocacy grounded in the teacher's professional beliefs, phrased in terms…

76 FR 9032 - Agency Information Collection Activities: Proposed Collection; Comment Request

Federal Register 2010, 2011, 2012, 2013, 2014

2011-02-16

...: Protection and Advocacy for Individuals With Mental Illness (PAIMI) Annual Program Performance Report (OMB No. 0930-0169)-- Revision The Protection and Advocacy for Individuals with Mental Illness (PAIMI) Act at 42... individual and systemic advocacy services to individuals with significant (severe) mental illness (adults...

A Campaign of Gratitude

ERIC Educational Resources Information Center

Kaaland, Christie

2009-01-01

Political advocacy continues to gain ground in the state of Washington after the landmark Washington state legislative support of emergency funding ($4.09 million) for library media centers during the 2008 legislative session. This stepped-up political advocacy is due to the efforts of the Washington Library Media Association Advocacy members…

Handbook for Rehabilitation Advocacy.

ERIC Educational Resources Information Center

National Rehabilitation Association, Alexandria, VA.

This handbook is intended to help advocates for persons with disabilities organize for advocacy, build effective coalitions, frame key issues, package critical information, and use the media to advance the cause. Individual sections address the following topics: how to change public policy; myths about advocacy; what makes politicians tick;…

Advocacy Simplified

ERIC Educational Resources Information Center

Dowd, Karen J.; Curva, Fely

2008-01-01

Most state professional associations promote and fund at some level, an advocacy program. These advocacy programs usually aim to support or plead for a program, policy, or proposal. They can range from simple communication to complex strategies, from daily interactions to annual productions, and from position papers to onsite, legislative visits.…

Broadening the Discussion about Evaluator Advocacy

ERIC Educational Resources Information Center

Hendricks, Michael

2014-01-01

This issue of "American Journal of Evaluation" presents commentaries by evaluation leaders, George Grob and Rakesh Mohan, which draw upon their wealth of practical experience to address questions about evaluator advocacy, including What is meant by the word "advocacy"? Should evaluators ever advocate? If so, when and how? What…

78 FR 36302 - Open Meeting of the Taxpayer Advocacy Panel Taxpayer Communications Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2013-06-17

... Taxpayer Communications Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice... Communications Project Committee will be conducted. The Taxpayer Advocacy Panel is soliciting public comments... Taxpayer Advocacy Panel Taxpayer Communications Project Committee will be held Thursday, July 18, 2013, at...

77 FR 61053 - Open Meeting of the Taxpayer Advocacy Panel Refund Processing Communications Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2012-10-05

... Refund Processing Communications Project Committee AGENCY: Internal Revenue Service (IRS), Treasury... Communications Project Committee will be conducted. The Taxpayer Advocacy Panel is soliciting public comments... Advocacy Panel Refund Processing Communications Project Committee will be held Thursday, November 1, 2012...

78 FR 48230 - Open Meeting of the Taxpayer Advocacy Panel Taxpayer Communications Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2013-08-07

... Taxpayer Communications Project Committee AGENCY: Internal Revenue Service (IRS) Treasury. ACTION: Notice of Meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Taxpayer Communications Project... Taxpayer Advocacy Panel Taxpayer Communications Project Committee will be held Thursday, September 19, 2013...

78 FR 69940 - Open Meeting of the Taxpayer Advocacy Panel Taxpayer Communications Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2013-11-21

... Taxpayer Communications Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Taxpayer Communications Project... Taxpayer Advocacy Panel Taxpayer Communications Project Committee will be held Thursday, December 19, 2013...

77 FR 2610 - Open Meeting of the Taxpayer Advocacy Panel Refund Processing Communications Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2012-01-18

... Refund Processing Communications Project Committee AGENCY: Internal Revenue Service (IRS) Treasury... Communications Project Committee will be conducted. The Taxpayer Advocacy Panel is soliciting public comments... Advocacy Panel Refund Processing Communications Project Committee will be held Thursday, February 2, 2012...

77 FR 8327 - Open Meeting of the Taxpayer Advocacy Panel Refund Processing Communications Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2012-02-14

... Refund Processing Communications Project Committee AGENCY: Internal Revenue Service (IRS) Treasury... Communications Project Committee will be conducted. The Taxpayer Advocacy Panel is soliciting public comments... Taxpayer Advocacy Panel Refund Processing Communications Project Committee will be held Thursday, March 01...

77 FR 47165 - Open Meeting of the Taxpayer Advocacy Panel Refund Processing Communications Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2012-08-07

... Refund Processing Communications Project Committee AGENCY: Internal Revenue Service (IRS) Treasury... Communications Project Committee will be conducted. The Taxpayer Advocacy Panel is soliciting public comments... Advocacy Panel Refund Processing Communications Project Committee will be held Thursday, September 6, 2012...

Directory of Child Advocacy Programs.

ERIC Educational Resources Information Center

Administration for Children, Youth, and Families (DHEW), Washington, DC.

This directory lists 107 child advocacy programs in 37 states, the District of Columbia and the Virgin Islands. Each entry includes project title, address, telephone number, contact person, a statement of purpose and a summary of current advocacy activities. Entries are indexed under the following terms: adolescent parenthood,…

45 CFR 1386.20 - Designated State Protection and Advocacy agency.

Code of Federal Regulations, 2012 CFR

2012-10-01

... DISABILITIES, DEVELOPMENTAL DISABILITIES PROGRAM FORMULA GRANT PROGRAMS State System for Protection and Advocacy of the Rights of Individuals with Developmental Disabilities § 1386.20 Designated State Protection... 45 Public Welfare 4 2012-10-01 2012-10-01 false Designated State Protection and Advocacy agency...

45 CFR 1386.20 - Designated State Protection and Advocacy agency.

Code of Federal Regulations, 2013 CFR

2013-10-01

... DISABILITIES, DEVELOPMENTAL DISABILITIES PROGRAM FORMULA GRANT PROGRAMS State System for Protection and Advocacy of the Rights of Individuals with Developmental Disabilities § 1386.20 Designated State Protection... 45 Public Welfare 4 2013-10-01 2013-10-01 false Designated State Protection and Advocacy agency...

45 CFR 1386.20 - Designated State Protection and Advocacy agency.

Code of Federal Regulations, 2011 CFR

2011-10-01

... DISABILITIES, DEVELOPMENTAL DISABILITIES PROGRAM FORMULA GRANT PROGRAMS State System for Protection and Advocacy of the Rights of Individuals with Developmental Disabilities § 1386.20 Designated State Protection... 45 Public Welfare 4 2011-10-01 2011-10-01 false Designated State Protection and Advocacy agency...

45 CFR 1386.20 - Designated State Protection and Advocacy agency.

Code of Federal Regulations, 2014 CFR

2014-10-01

... DISABILITIES, DEVELOPMENTAL DISABILITIES PROGRAM FORMULA GRANT PROGRAMS State System for Protection and Advocacy of the Rights of Individuals with Developmental Disabilities § 1386.20 Designated State Protection... 45 Public Welfare 4 2014-10-01 2014-10-01 false Designated State Protection and Advocacy agency...

Media Advocacy. Technical Assistance Packet.

ERIC Educational Resources Information Center

Join Together, Boston, MA.

Media advocacy is an environmental strategy that can be used to support alcohol and other drug prevention and policy development efforts. It helps shift the focus from understanding public health issues as individual problems to understanding them as social conditions that require collective behavior changes. Successful media advocacy uses the…

Front-Line Advocacy: Advocacy Based on Effective Relationships

ERIC Educational Resources Information Center

Gooden, Benny L.

2012-01-01

When American Association of School Administrators (AASA) and other membership organizations try to engage individuals in advocacy, a frequent exhortation is "Contact your representatives in Congress." Professional membership groups also stress that written communication is more powerful than phone calls to a representative's office, and they…

Forging stronger partnerships between academic health centers and patient-driven organizations.

PubMed

Gallin, Elaine K; Bond, Enriqueta; Califf, Robert M; Crowley, William F; Davis, Pamela; Galbraith, Richard; Reece, E Albert

2013-09-01

In this article, the authors review the unique role that patient-driven organizations, such as patient advocacy groups and voluntary health organizations (PAG/VHOs), play in translational and clinical research. The importance of fostering collaborations between these organizations and U.S. academic health centers (AHCs) is also discussed. Although both the PAG/VHO community and AHCs are heterogeneous, and although not all organizations are well governed or provide independent, well-researched views, there are many outstanding, well-managed, independent PAG/VHOs in the United States whose missions overlap with those of AHCs. The characteristics of effective PAG/VHOs that would serve as excellent partners for AHCs are discussed, and examples are provided regarding their many contributions, which have included advancing research on rare diseases, recruiting patients for clinical trials, and establishing patient registries and biospecimen banks. The authors present feedback obtained from informal discussions with PAG/VHO staff, as well as a survey of a small sample of organizations, that has identified bureaucratic processes, negotiating intellectual property rights, and institutional review board (IRB) delays as the most problematic areas of interactions with AHCs. Actions are suggested for building effective partnerships between the two sectors and the activities that AHCs should undertake to facilitate their interactions with PAG/VHOs including streamlining contract review and IRB processes and finding ways to better align the incentives motivating academic clinical and translational investigators with the goals of PAG/VHOs. This article is one product of the Clinical Research Forum's Partnering with Patient Advocacy Groups Initiative.

76 FR 24893 - National Institute of Environmental Health Sciences; Notice of Meetings

Federal Register 2010, 2011, 2012, 2013, 2014

2011-05-03

... Act, as amended (5 U.S.C. App.), notice is hereby given of meetings of the Interagency Breast Cancer... listed below in advance of the meeting. Name of Committee: Interagency Breast Cancer and Environmental... participation in decisions relating to breast cancer research by increasing the involvement of patient advocacy...

77 FR 6567 - Assessment of Analgesic Treatment of Chronic Pain-A Public Workshop; Request for Comments

Federal Register 2010, 2011, 2012, 2013, 2014

2012-02-08

... investigators, regulators, manufacturers, patients, caregivers, and advocacy groups. Where gaps in our knowledge... with CNCP. FDA will be considering the following questions during the workshop: 1. What is currently... pharmaceuticals chronically for the treatment of pain? 3. What is known regarding use of pain biomarkers (e.g...

Expanding Trauma through Space and Time: Mapping the Rhetorical Strategies of Trauma Carrier Groups

ERIC Educational Resources Information Center

Degloma, Thomas

2009-01-01

In this article, I detail two rhetorical strategies that trauma carrier groups--including social movement organizations, professional mental health associations, and patient advocacy groups--use to expand the relevance of trauma and Post-Traumatic Stress Disorder (PTSD) through space and time: the social transmission of trauma and the social…

Steps towards Collective Sustainability in Biomedical Research.

PubMed

Salvetti, Marco; Lubetzki, Catherine; Kapoor, Raj; Ristori, Giovanni; Costa, Ericka; Battaglia, Mario A; Andreaus, Michele; Abbracchio, Maria Pia; Matarese, Giuseppe; Zaratin, Paola

2018-05-01

The optimism surrounding multistakeholder research initiatives does not match the clear view of policies that are needed to exploit the potential of these collaborations. Here we propose some action items that stem from the integration between research advancements with the perspectives of patient-advocacy organizations, academia, and industry. Copyright © 2018 Elsevier Ltd. All rights reserved.

Textbook of Child and Adolescent Psychiatry. 3rd Edition.

ERIC Educational Resources Information Center

Wiener, Jerry M.; Dulcan, Mina K.

The third edition of this textbook continues its tradition of integrating clinical wisdom and scientific research to improve patient care and advocacy for children and families. Each of the 56 chapters presents a summary of a core topic, blending clinical experience with evidence-based practices in assessment and treatment. Divided into 10 parts,…

Genetics Home Reference: short stature, hyperextensibility, hernia, ocular depression, Rieger anomaly, and teething ...

MedlinePlus

... syndrome Orphanet: SHORT syndrome Patient Support and Advocacy Resources (5 links) Human Growth Foundation Little People of America Little People ... Reviewed : December 2013 Published : June 26, 2018 The resources on this site should not be used as a ... Department of Health & Human Services National Institutes of Health National Library of ...

Advocacy for Kids: A View from the Residential Trenches.

ERIC Educational Resources Information Center

Parsons, Jon R.

1995-01-01

Presents the concept of advocacy in the trenches, wherein residential care staff intercede with and for dysfunctional families, dysfunctional children, and the bureaucracy. This advocacy emphasizes individualized treatment and case-by-case networking, focusing not on broad causes but on what is in the best interest of each child. (ET)

Participation, Decentralization, and Advocacy Planning, Resource Paper No. 25.

ERIC Educational Resources Information Center

Kasperson, Roger E.; Breitbart, Myrna

This resource paper on the subject of citizen participation, decentralization, and advocacy planning is part of a series designed to supplement undergraduate geography courses. The approach of the paper de-emphasizes inventory or case study reviews of specific participation or advocacy planning projects for a more general conceptual discussion of…

76 FR 45007 - Open Meeting of the Taxpayer Advocacy Panel Tax Forms and Publications Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2011-07-27

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Taxpayer Advocacy Panel Tax Forms and Publications Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Tax Forms and Publications...

77 FR 67735 - Open Meeting of the Taxpayer Advocacy Panel Tax Forms and Publications Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2012-11-13

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Taxpayer Advocacy Panel Tax Forms and Publications Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of Meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Tax Forms and Publications...

76 FR 37200 - Open Meeting of the Taxpayer Advocacy Panel Small Business/Self Employed Correspondence Exam...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-06-24

... Small Business/Self Employed Correspondence Exam Practitioner Engagement Project Committee AGENCY... Taxpayer Advocacy Panel Small Business/ Self Employed Correspondence Exam Practitioner Engagement Project... Act, 5 U.S.C. App. (1988) that an open meeting of the Taxpayer Advocacy Panel Small Business/Self...

76 FR 10942 - Open Meeting of the Taxpayer Advocacy Panel Small Business/Self Employed Correspondence Exam...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-02-28

... Small Business/Self Employed Correspondence Exam Practitioner Engagement Project Committee AGENCY... Taxpayer Advocacy Panel Small Business/ Self Employed Correspondence Exam Practitioner Engagement Project... Act, 5 U.S.C. App. (1988) that an open meeting of the Taxpayer Advocacy Panel Small Business/Self...

76 FR 46897 - Open Meeting of the Taxpayer Advocacy Panel Small Business/Self Employed Correspondence Exam...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-08-03

... Small Business/Self Employed Correspondence Exam Practitioner Engagement Project Committee AGENCY... Taxpayer Advocacy Panel Small Business/ Self Employed Correspondence Exam Practitioner Engagement Project... Advisory Committee Act, 5 U.S.C. App. (1988) that an open meeting of the Taxpayer Advocacy Panel Small...

76 FR 6189 - Open Meeting of the Taxpayer Advocacy Panel Small Business/Self Employed Correspondence Exam...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-02-03

... Small Business/Self Employed Correspondence Exam Practitioner Engagement Project Committee AGENCY... Taxpayer Advocacy Panel Small Business/ Self Employed Correspondence Exam Practitioner Engagement Project... Act, 5 U.S.C. App. (1988) that an open meeting of the Taxpayer Advocacy Panel Small Business/Self...

76 FR 22170 - Open Meeting of the Taxpayer Advocacy Panel Small Business/Self Employed Correspondence Exam...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-04-20

... Small Business/Self Employed Correspondence Exam Practitioner Engagement Project Committee AGENCY... Taxpayer Advocacy Panel Small Business/ Self Employed Correspondence Exam Practitioner Engagement Project... Act, 5 U.S.C. App. (1988) that an open meeting of the Taxpayer Advocacy Panel Small Business/Self...

76 FR 56879 - Open Meeting of the Taxpayer Advocacy Panel Small Business/Self Employed Correspondence Exam...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-09-14

... Small Business/Self Employed Correspondence Exam Practitioner Engagement Project Committee AGENCY... Taxpayer Advocacy Panel Small Business/ Self Employed Correspondence Exam Practitioner Engagement Project... Advisory Committee Act, 5 U.S.C. App. (1988) that an open meeting of the Taxpayer Advocacy Panel Small...

76 FR 63715 - Open Meeting of the Taxpayer Advocacy Panel Small Business/Self Employed Correspondence Exam...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-10-13

... Small Business/Self Employed Correspondence Exam Practitioner Engagement Project Committee AGENCY... Taxpayer Advocacy Panel Small Business/ Self Employed Correspondence Exam Practitioner Engagement Project... Advisory Committee Act, 5 U.S.C. App. (1988) that an open meeting of the Taxpayer Advocacy Panel Small...

Advocacy and Institutional Racism.

ERIC Educational Resources Information Center

Brophy, Michael C.; And Others

The purpose of this paper is to provide a perspective on advocacy and advocate counseling for participants in the University of Maryland Sixth Annual Community-Clinical Workshop, 1976. It attempts to define relevant terms and outline a method of self-advocacy which can, if utilized properly, lessen the impact of institutional racism. The terms,…

Advocacy, a Role for DD Councils.

ERIC Educational Resources Information Center

Paul, James, L., Ed.; And Others

The advocacy role of state developmental disabilities councils is examined in the monograph. It is explained that the material was gathered from a 1974 conference in Winter Park, Colorado. Topics addressed include the potential for advocacy, a personal perspective on developmental disabilities from a cerebral palsied adult, planning and evaluating…

The Big Picture of Advocacy: Counselor, Heal Society and Thyself

ERIC Educational Resources Information Center

Roysircar, Gargi

2009-01-01

This article, motivational in purpose, encourages counselors to be engaged in the growing movement for social justice advocacy in counseling. Analyses of a macrolevel framework of advocacy extend to microlevel operations of recruitment, sociopolitical education, diversity management, and self-care of counselor-advocates. Case studies and exemplars…

Four Steps to Being a Local Advocate for Physical Education

ERIC Educational Resources Information Center

Richards, K. Andrew R.

2015-01-01

Although advocacy can also take place at the state and national levels, the foundation of advocacy is high-quality teaching and local initiatives. The purpose of this article is to review four steps that can be taken by PE teachers who are interested in engaging in local advocacy efforts.

School Counselors United in Professional Advocacy: A Systems Model

ERIC Educational Resources Information Center

Cigrand, Dawnette L.; Havlik, Stacey Gaenzle; Malott, Krista M.; Jones, SaDohl Goldsmith

2015-01-01

Limited budgets may place educational positions in jeopardy and if school counseling positions become jeopardized, then school counselors must communicate their role and impact more effectively. However, school counselors may lack training and experience in professional self-advocacy practices, and advocacy efforts may be undermined by role…

Policy and Advocacy Concepts and Processes: Innovative Content in Early Childhood Teacher Education

ERIC Educational Resources Information Center

Hollingsworth, Heidi L.; Knight-McKenna, Mary; Bryan, Ren

2016-01-01

Knowledge and skills regarding policy and advocacy are important expectations for today's early childhood workforce, yet policy and advocacy content and processes have not traditionally been emphasized in teacher preparation programmes. This article describes an innovative undergraduate course that goes beyond traditional foci on developmental…

Treatments for Neurodevelopmental Disorders: Evidence, Advocacy, and the Internet

ERIC Educational Resources Information Center

Di Pietro, Nina C.; Whiteley, Louise; Mizgalewicz, Ania; Illes, Judy

2013-01-01

The Internet is a major source of health-related information for parents of sick children despite concerns surrounding quality. For neurodevelopmental disorders, the websites of advocacy groups are a largely unexamined source of information. We evaluated treatment information posted on nine highly-trafficked advocacy websites for autism, cerebral…

What Is Self-Advocacy? NRC Fact Sheet

ERIC Educational Resources Information Center

Hall, Mair

2010-01-01

Self-advocacy is about independent groups of people with disabilities working together for justice by helping each other take charge of their lives and fight discrimination. The seeds of the self-advocacy movement go back to 1968 when a Swedish parent's organization held a meeting for people with developmental disabilities. Today, the…

Health Advocacy--Counting the Costs

ERIC Educational Resources Information Center

Dyall, Lorna; Marama, Maria

2010-01-01

Access to, and delivery of, safe and culturally appropriate health services is increasingly important in New Zealand. This paper will focus on counting the costs of health advocacy through the experience of a small non government charitable organisation, the Health Advocates Trust, (HAT) which aimed to provide advocacy services for a wide range of…

Academic Advocacy for Gifted Children: A Parent's Complete Guide

ERIC Educational Resources Information Center

Gilman, Barbara J.

2008-01-01

Formerly titled "Empowering Gifted Minds: Educational Advocacy That Works", the author believes this book is the definitive manual on gifted advocacy for gifted students. The author tells parents and teachers how to document a child's abilities to provide reasonable educational options year by year. This book provides imperative information on…

76 FR 56878 - Open Meeting of the Taxpayer Advocacy Panel Volunteer Income Tax Assistance Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2011-09-14

... Volunteer Income Tax Assistance Project Committee AGENCY: Internal Revenue Service (IRS) Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Volunteer Income Tax... Taxpayer Advocacy Panel Volunteer Income Tax Assistance Project Committee will be held Tuesday, October 11...

77 FR 61052 - Open Meeting of the Taxpayer Advocacy Panel Toll-Free Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2012-10-05

... Taxpayer Advocacy Panel is soliciting public comments, ideas and suggestions on improving customer service... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Taxpayer Advocacy Panel Toll-Free Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting...

77 FR 21156 - Open Meeting of the Taxpayer Advocacy Panel Toll-Free Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2012-04-09

... Taxpayer Advocacy Panel is soliciting public comments, ideas and suggestions on improving customer service... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Taxpayer Advocacy Panel Toll-Free Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of Meeting...

77 FR 8328 - Open Meeting of the Taxpayer Advocacy Panel Toll-Free Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2012-02-14

... Taxpayer Advocacy Panel is soliciting public comments, ideas and suggestions on improving customer service... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Taxpayer Advocacy Panel Toll-Free Project Committee AGENCY: Internal Revenue Service (IRS) Treasury. ACTION: Notice of meeting...

75 FR 68403 - Open meeting of the Taxpayer Advocacy Panel

Federal Register 2010, 2011, 2012, 2013, 2014

2010-11-05

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open meeting of the Taxpayer Advocacy Panel AGENCY: Internal Revenue Service (IRS) Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of....C. App. (1988) that an open meeting of the Taxpayer Advocacy Panel will be held Tuesday, December 7...

45 CFR 1386.21 - Requirements and authority of the Protection and Advocacy System.

Code of Federal Regulations, 2010 CFR

2010-10-01

... Protection and Advocacy of the Rights of Individuals with Developmental Disabilities § 1386.21 Requirements... with developmental disabilities to remedy abuse, neglect and violations of rights as well and... disabilities regarding rights violations. (f) A Protection and Advocacy System may exercise its authority under...

Exploring Nonoffending Caregiver Satisfaction with a Children's Advocacy Center

ERIC Educational Resources Information Center

Bonach, Kathryn; Mabry, J. Beth; Potts-Henry, Candice

2010-01-01

This study is a case evaluation research report on one Children's Advocacy Center that provides a coordinated response to allegations of child maltreatment, particularly sexual abuse. The data come from a mailed survey of nonoffending caregivers measuring their satisfaction with services provided through the Children's Advocacy Center. The results…

76 FR 12418 - Recruitment Notice for the Taxpayer Advocacy Panel

Federal Register 2010, 2011, 2012, 2013, 2014

2011-03-07

... for Recruitment of IRS Taxpayer Advocacy Panel (TAP) Members. DATES: March 14, 2011 through April 29... Advocacy Panel (TAP). The mission of the TAP is to listen to taxpayers, identify issues that affect taxpayers, and make suggestions for improving IRS service and customer satisfaction. The TAP serves as an...

77 FR 13390 - Recruitment Notice for the Taxpayer Advocacy Panel

Federal Register 2010, 2011, 2012, 2013, 2014

2012-03-06

... for Recruitment of IRS Taxpayer Advocacy Panel (TAP) Members. DATES: March 19, 2012 through April 27... Advocacy Panel (TAP). The mission of the TAP is to listen to taxpayers, identify issues that affect taxpayers, and make suggestions for improving IRS service and customer satisfaction. The TAP serves as an...

75 FR 9028 - Recruitment Notice for the Taxpayer Advocacy Panel

Federal Register 2010, 2011, 2012, 2013, 2014

2010-02-26

... for Recruitment of IRS Taxpayer Advocacy Panel (TAP) Members. DATES: March 15, 2010 through April 30... Advocacy Panel (TAP). The mission of the TAP is to listen to taxpayers, identify issues that affect taxpayers, and make suggestions for improving IRS service and customer satisfaction. The TAP serves as an...

77 FR 37101 - Open Meeting of the Taxpayer Advocacy Panel Bankruptcy Compliance Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2012-06-20

... Bankruptcy Compliance Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Bankruptcy Compliance Project Committee will be conducted. The Taxpayer Advocacy Panel is soliciting public comments, ideas, and suggestions on...

77 FR 47165 - Open Meeting of the Taxpayer Advocacy Panel Bankruptcy Compliance Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2012-08-07

... Bankruptcy Compliance Project Committee AGENCY: Internal Revenue Service (IRS) Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Bankruptcy Compliance Project Committee will be conducted. The Taxpayer Advocacy Panel is soliciting public comments, ideas, and suggestions on...

Building Evidence for Music Education Advocacy

ERIC Educational Resources Information Center

Shorner-Johnson, Kevin

2013-01-01

The economic challenges facing public schools and music education are immense. In this context, music teachers and supporters will need to engage in persuasive advocacy to protect resource allocations to music programs. It is worthwhile to consider the model of music education advocacy that allowed music to be adopted into the Boston Public…

42 CFR 51.31 - Conduct of protection and advocacy activities.

Code of Federal Regulations, 2011 CFR

2011-10-01

... 42 Public Health 1 2011-10-01 2011-10-01 false Conduct of protection and advocacy activities. 51.31 Section 51.31 Public Health PUBLIC HEALTH SERVICE, DEPARTMENT OF HEALTH AND HUMAN SERVICES GRANTS... shall establish policies and procedures to guide and coordinate advocacy activities. The P&A system...

Foundation-industry relationships--a new business model joint-venture philanthropy in therapy development.

PubMed

Bartek, Ronald J

2014-01-01

The business model for medical therapy development has changed drastically. Large companies that once conducted their own Research and Development (R&D) and funded all the preclinical studies, all phases of clinical development and marketing of the products are increasingly turning to others for more and more of the earlier work in hopes of being able to in-license a de-risked program well downstream, take it through the final phases of clinical development and into the marketplace. This new paradigm has required patient-advocacy foundations, especially in the rare-disease space, to become far more effective in building relationships with all the players along the therapy-development pathway -- academic scientists, government agencies, other foundations with overlapping interests, biotechs, small biopharmaceutical entities and even the larger industry companies. From the perspective of the patient-advocacy community, these increasingly essential public-private partnerships have taken on the nature of what could be called joint-venture philanthropy and involve a broad spectrum of collaborations and financial relationships between foundations and industry partners that are not without concerns about potential conflicts of interest.

Management, leadership, and user control in self-advocacy: an english case study.

PubMed

Tilley, Elizabeth

2013-12-01

This paper presents findings from a qualitative research project on an English self-advocacy organization. In light of recent political and economic developments that have threatened the sustainability of a number of self-advocacy groups for people with intellectual disability, I seek to explore how one particular organization managed to survive and grow. In particular, the paper explores themes of management, leadership, and user control, linking these to external perceptions about self-advocacy organizations. The organization in my study developed an "interdependent" governance model based on key organizational roles for nondisabled advisors and self-advocates, which proved popular with external funders. Despite the organization's notable achievements, its success raises questions for the wider self-advocacy movement, notably how leadership capacity can be developed among self-advocates.

Coleman Advocates for Children And Youth: a pioneering child advocacy organization (1974-2008).

PubMed

Carnochan, Sarah; Austin, Michael J

2011-01-01

Coleman Advocates for Youth and Children is a pioneering 30-year-old child advocacy organization founded by several affluent community members and children's service professionals to stop housing abused and neglected children in juvenile hall. Today, low-income youth and parents in families of color are now assuming leadership in developing a unique hybrid approach that integrates community organizing with more traditional child advocacy strategies and focuses on increasing affordable housing and improving the city's educational system. The strategies employed by Coleman have also evolved, shifting from insider advocacy with administrative officials to public campaigns targeting the city budget process, to local initiative campaigns, and most recently to electoral politics. This organizational history features the issues mission and structure, leadership, managing issues, advocacy strategies and community relations, and funding.

Recommendations of the Global Multiple System Atrophy Research Roadmap Meeting.

PubMed

Walsh, Ryan R; Krismer, Florian; Galpern, Wendy R; Wenning, Gregor K; Low, Phillip A; Halliday, Glenda; Koroshetz, Walter J; Holton, Janice; Quinn, Niall P; Rascol, Olivier; Shaw, Leslie M; Eidelberg, David; Bower, Pam; Cummings, Jeffrey L; Abler, Victor; Biedenharn, Judy; Bitan, Gal; Brooks, David J; Brundin, Patrik; Fernandez, Hubert; Fortier, Philip; Freeman, Roy; Gasser, Thomas; Hewitt, Art; Höglinger, Günter U; Huentelman, Matt J; Jensen, Poul H; Jeromin, Andreas; Kang, Un Jung; Kaufmann, Horacio; Kellerman, Lawrence; Khurana, Vikram; Klockgether, Thomas; Kim, Woojin Scott; Langer, Carol; LeWitt, Peter; Masliah, Eliezer; Meissner, Wassilios; Melki, Ronald; Ostrowitzki, Susanne; Piantadosi, Steven; Poewe, Werner; Robertson, David; Roemer, Cyndi; Schenk, Dale; Schlossmacher, Michael; Schmahmann, Jeremy D; Seppi, Klaus; Shih, Lily; Siderowf, Andrew; Stebbins, Glenn T; Stefanova, Nadia; Tsuji, Shoji; Sutton, Sharon; Zhang, Jing

2018-01-09

Multiple system atrophy (MSA) is a rare neurodegenerative disorder with substantial knowledge gaps despite recent gains in basic and clinical research. In order to make further advances, concerted international collaboration is vital. In 2014, an international meeting involving leaders in the field and MSA advocacy groups was convened in Las Vegas, Nevada, to identify critical research areas where consensus and progress was needed to improve understanding, diagnosis, and treatment of the disease. Eight topic areas were defined: pathogenesis, preclinical modeling, target identification, endophenotyping, clinical measures, imaging biomarkers, nonimaging biomarkers, treatments/trial designs, and patient advocacy. For each topic area, an expert served as a working group chair and each working group developed priority-ranked research recommendations with associated timelines and pathways to reach the intended goals. In this report, each groups' recommendations are provided. Copyright © 2017 American Academy of Neurology.

Advocacy for health equity: a synthesis review.

PubMed

Farrer, Linden; Marinetti, Claudia; Cavaco, Yoline Kuipers; Costongs, Caroline

2015-06-01

POLICY POINTS: Many barriers hamper advocacy for health equity, including the contemporary economic zeitgeist, the biomedical health perspective, and difficulties cooperating across policy sectors on the issue. Effective advocacy should include persistent efforts to raise awareness and understanding of the social determinants of health. Education on the social determinants as part of medical training should be encouraged, including professional training within disadvantaged communities. Advocacy organizations have a central role in advocating for health equity given the challenges bridging the worlds of civil society, research, and policy. Health inequalities are systematic differences in health among social groups that are caused by unequal exposure to-and distributions of-the social determinants of health (SDH). They are persistent between and within countries despite action to reduce them. Advocacy is a means of promoting policies that improve health equity, but the literature on how to do so effectively is dispersed. The aim of this review is to synthesize the evidence in the academic and gray literature and to provide a body of knowledge for advocates to draw on to inform their efforts. This article is a systematic review of the academic literature and a fixed-length systematic search of the gray literature. After applying our inclusion criteria, we analyzed our findings according to our predefined dimensions of advocacy for health equity. Last, we synthesized our findings and made a critical appraisal of the literature. The policy world is complex, and scientific evidence is unlikely to be conclusive in making decisions. Timely qualitative, interdisciplinary, and mixed-methods research may be valuable in advocacy efforts. The potential impact of evidence can be increased by "packaging" it as part of knowledge transfer and translation. Increased contact between researchers and policymakers could improve the uptake of research in policy processes. Researchers can play a role in advocacy efforts, although health professionals and disadvantaged people, who have direct contact with or experience of hardship, can be particularly persuasive in advocacy efforts. Different types of advocacy messages can accompany evidence, but messages should be tailored to advocacy target. Several barriers hamper advocacy efforts. The most frequently cited in the academic literature are the current political and economic zeitgeist and related public opinion, which tend to blame disadvantaged people for their ill health, even though biomedical approaches to health and political short-termism also act as barriers. These barriers could be tackled through long-term actions to raise public awareness and understanding of the SDH and through training of health professionals in advocacy. Advocates need to take advantage of "windows of opportunity," which open and close quickly, and demonstrate expertise and credibility. This article brings together for the first time evidence from the academic and the gray literature and provides a building block for efforts to advocate for health equity. Evidence regarding many of the dimensions is scant, and additional research is merited, particularly concerning the applicability of findings outside the English-speaking world. Advocacy organizations have a central role in advocating for health equity, given the challenges bridging the worlds of civil society, research, and policy. © 2015 The Authors. The Milbank Quarterly published by Wiley Periodicals, Inc. on behalf of The Milbank Memorial Fund.

The geometric curvature of the lumbar spine during restricted and unrestricted squats.

PubMed

Hebling Campos, Mário; Furtado Alaman, Laizi I; Seffrin-Neto, Aldo A; Vieira, Carlos A; Costa de Paula, Marcelo; Barbosa de Lira, Claudio A

2017-06-01

The main purpose of this study was to analyze the behavior of the geometric curvature of the lumbar spine during restricted and unrestricted squats, using a novel investigative method. The rationale for our hypothesis is that the lumbar curvature has different patterns at different spine levels depending on the squat technique used. Spine motion was collected via stereo-photogrammetric analysis in nineteen participants (11 males, 8 females). The reconstructed spine points at the upright neutral position and at the deepest position of the squat exercise were projected onto the sagittal plane of the trunk, a polynomial was fitted to the data, and were quantified the two-dimensional geometric curvature at lower, central and higher lumbar levels, besides the inclination of trunk and lumbosacral region, the overall geometric curvature and overall angle of the lumbar spine. The mean values for each variable were analysed with paired t-test (P<0.05). The lumbar presents a flexion from upright neutral posture to deepest point of the movement, but for the lower lumbar the flexion is less intense if the knees travel anteriorly past the toes. The trunk and the lumbosacral region lean forward in both squat techniques and these effects are also reduced in unrestricted squats. The data collected in the study are evidence that during barbell squats the lumbar curvature has different patterns at different spinal levels depending on the exercise technique. The lower lumbar spine appears to be less overloaded during unrestricted squats.

Use of Twitter Polls to Determine Public Opinion Regarding Content Presented at a Major National Specialty Society Meeting.

PubMed

Rosenkrantz, Andrew B; Hawkins, C Matthew

2017-02-01

The aim of this study was to evaluate the feasibility of using Twitter polls to assess public opinion regarding session content at a national specialty society meeting. Twitter polls allow users to embed multiple-choice questions within tweets and automatically aggregate responses. Two radiologists attending the 2016 annual meeting of the ACR posted a Twitter poll containing the hashtag #ACR2016 during 10 meeting sessions addressing socioeconomics/advocacy, patient experience, and social media/informatics (20 polls total). Each poll contained a question asking for an opinion regarding the session's content. Polls were open for responses for 24 hours. The average number of responses per poll was significantly higher for the user with the larger number of Twitter followers (24.3 ± 14.4 versus 11.2 ± 9.8, P = .015). A total of 57% of respondents agreed that radiologists' payments should shift to value-based payments, and 86% agreed that radiologists should routinely survey their patients to monitor quality; however, 83% disagreed with basing physician payments on patient satisfaction scores. A total of 85% disagreed that the artificial intelligence supercomputer Watson will entirely replace radiologists. A total of 76% agreed that social media can drive business at less cost than standard marketing. A total of 56% agreed with the direction of the ACR's advocacy and regulatory efforts, whereas 74% considered the ACR's advocacy efforts to be moderately or very useful for their practice. A total of 50% planned to change their practice on the basis of keynote remarks by Dr Ezekiel Emanuel. Twitter polls provide a free and easy infrastructure to potentially capture global public sentiment during the course of a medical society meeting. Their use may enrich and promote discussions of key session content. Copyright © 2016 American College of Radiology. Published by Elsevier Inc. All rights reserved.

Challenging Ties between State and Tobacco Industry: Advocacy Lessons from India

PubMed Central

Bhojani, Upendra; Venkataraman, Vidya; Manganawar, Bheemaray

2013-01-01

Background: Globally, tobacco use is a major public health concern given its huge morbidity and mortality burden that is inequitably high in low- and middle-income countries. The World Health Organization has suggested banning the advertisement, promotion and sponsorship of tobacco. However, governments in some countries, including India, are either directly engaged in tobacco industry operations or have a mandate to promote tobacco industry development. This paper analyses a short-term advocacy campaign that challenged the state-tobacco industry ties to draw lessons for effective public health advocacy. Method: This paper uses a case study method to analyze advocacy efforts in India to thwart the state-tobacco industry partnership: the Indian government’s sponsorship and support to a global tobacco industry event. The paper explores multiple strategies employed in the five-month advocacy campaign (May to October 2010) to challenge this state-industry tie. In doing so, we describe the challenges faced and the lessons learnt for effective advocacy. Results: Government withdrew participation and financial sponsorship from the tobacco industry event. Use of multiple strategies including engaging all concerned government agencies from the beginning, strategic use of media, presence and mobilization of civil society, and use of legal tools to gain information and judicial action, were complementary in bringing desired outcomes. Conclusion: Use of multiple and complementary advocacy strategies could lead to positive outcomes in a short-time campaign. The Framework Convention on Tobacco Control could form an important advocacy tool, especially in countries that have ratified it, to advocate for improvements in national tobacco control regulations. PMID:24688958

45 CFR 1386.23 - Periodic reports: Protection and Advocacy System.

Code of Federal Regulations, 2014 CFR

2014-10-01

... advocacy work and training activities, and the outcomes which it strives to accomplish. (2) Where applicable, the SOP must include a description of how the Protection and Advocacy System operates and how it... for assistance when it is outside the scope of the SOP but they must inform individuals that this is...

45 CFR 1386.23 - Periodic reports: Protection and Advocacy System.

Code of Federal Regulations, 2011 CFR

2011-10-01

... advocacy work and training activities, and the outcomes which it strives to accomplish. (2) Where applicable, the SOP must include a description of how the Protection and Advocacy System operates and how it... for assistance when it is outside the scope of the SOP but they must inform individuals that this is...

45 CFR 1386.23 - Periodic reports: Protection and Advocacy System.

Code of Federal Regulations, 2013 CFR

2013-10-01

... advocacy work and training activities, and the outcomes which it strives to accomplish. (2) Where applicable, the SOP must include a description of how the Protection and Advocacy System operates and how it... for assistance when it is outside the scope of the SOP but they must inform individuals that this is...

45 CFR 1386.23 - Periodic reports: Protection and Advocacy System.

Code of Federal Regulations, 2012 CFR

2012-10-01

... advocacy work and training activities, and the outcomes which it strives to accomplish. (2) Where applicable, the SOP must include a description of how the Protection and Advocacy System operates and how it... for assistance when it is outside the scope of the SOP but they must inform individuals that this is...

78 FR 36303 - Open Meeting of the Taxpayer Advocacy Panel Notices and Correspondence Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2013-06-17

... Notices and Correspondence Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of Meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Notices and Correspondence... Act, 5 U.S.C. App. (1988) that a meeting of the Taxpayer Advocacy Panel Notices and Correspondence...

78 FR 22948 - Open Meeting of the Taxpayer Advocacy Panel Notices and Correspondence Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2013-04-17

... Notices and Correspondence Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of Meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Notices and Correspondence... Act, 5 U.S.C. App. (1988) that a meeting of the Taxpayer Advocacy Panel Notices and Correspondence...

78 FR 28946 - Open Meeting of the Taxpayer Advocacy Panel Notices and Correspondence Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2013-05-16

... Notices and Correspondence Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of Meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Notices and Correspondence... Act, 5 U.S.C. App. (1988) that a meeting of the Taxpayer Advocacy Panel Notices and Correspondence...

Management, Leadership, and User Control in Self-Advocacy: An English Case Study

ERIC Educational Resources Information Center

Tilley, Elizabeth

2013-01-01

This paper presents findings from a qualitative research project on an English self-advocacy organization. In light of recent political and economic developments that have threatened the sustainability of a number of self-advocacy groups for people with intellectual disability, I seek to explore how one particular organization managed to survive…

Social Justice Advocacy among Graduate Students: An Empirical Investigation

ERIC Educational Resources Information Center

Linnemeyer, Rachel McQuown

2009-01-01

Although social justice advocacy has increasingly been acknowledged as important in the field of psychology (e.g., Goodman et al., 2004; Toporek et al., 2006a, Vera & Speight, 2003), there is a dearth of empirical research examining social justice advocacy across graduate psychology students. This mixed-methods study examined demographic and…

New Advocacy Groups Shaking up Education Field

ERIC Educational Resources Information Center

Sawchuk, Stephen

2012-01-01

A new generation of education advocacy groups has emerged to play a formidable political role in states and communities across the country. Those groups are shaping policy through aggressive lobbying and campaign activity--an evolution in advocacy that is primed to continue in the 2012 elections and beyond. Though the record of their electoral…

75 FR 62630 - Open Meeting of the Taxpayer Advocacy Panel Tax Forms and Publications/MLI Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2010-10-12

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Taxpayer Advocacy Panel Tax Forms and Publications/MLI Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Tax Forms and...

75 FR 39330 - Open Meeting of the Taxpayer Advocacy Panel Tax Forms and Publications/MLI Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2010-07-08

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Taxpayer Advocacy Panel Tax Forms and Publications/MLI Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Tax Forms and...

75 FR 55404 - Open Meeting of the Taxpayer Advocacy Panel Tax Forms and Publications/MLI Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2010-09-10

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Taxpayer Advocacy Panel Tax Forms and Publications/MLI Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Tax Forms and...

77 FR 67735 - Open Meeting of the Taxpayer Advocacy Panel Toll-Free Phone Line Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2012-11-13

... Toll-Free Phone Line Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of Meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Toll-Free Phone Line Project... Taxpayer Advocacy Panel Toll-Free Phone Line Project Committee will be held Monday, December 3rd, 2012...

Advocacy for Equity: Extending Culturally Relevant Pedagogy in Predominantly White Suburban Schools

ERIC Educational Resources Information Center

Warren-Grice, April

2017-01-01

Background/Context: This article describes Black educators in predominantly White suburban schools who have used advocacy through the lens of culturally relevant pedagogy and serve as Educational Cultural Negotiators to help the students of color in these spaces academically and socially. This article highlights the advocacy needed to address the…

Professor Brand Advocacy: Do Brand Relationships Matter?

ERIC Educational Resources Information Center

Jillapalli, Ravi K.; Wilcox, James B.

2010-01-01

The trend among students to advocate their professors online continues to generate interest within marketing academia. Brand advocacy in products and services has played a vital role in marketing. However, no known research to date has embraced the idea of brand advocacy in marketing education. This research builds on the recent human brand…

Assessing the Efficacy of a School Health Education Advocacy Lesson with College Students

ERIC Educational Resources Information Center

Wallen, Michele; Chaney, Beth H.; Birch, David A.

2012-01-01

Purpose: The researchers evaluated the efficacy of an advocacy lesson to assess change in intentions to advocate for school health education. This study also measured changes in participants' understanding the importance of school health education and perceived effectiveness in applying advocacy skills. Methods: A convenience sample of college…

Advocacy for Children with Social-Communication Needs: Perspectives from Parents and School Professionals

ERIC Educational Resources Information Center

Burke, Meghan M.; Meadan-Kaplansky, Hedda; Patton, Kimberly A.; Pearson, Jamie N.; Cummings, Katrina P.; Lee, Chung eun

2018-01-01

Although parents of children with disabilities often advocate for special education services, most research has only examined advocacy from the perspectives of parents. Given that advocacy is an interpersonal exchange, it is crucial to understand the perspectives of parents and school professionals. In this study, focus groups were conducted with…

The Accomplishments of Disabled Women's Advocacy Organizations and Their Future in Korea

ERIC Educational Resources Information Center

Kim, Kyung Mee

2010-01-01

Since the late 1990s disabled women's advocacy organizations have fought against oppression and have made great strides in Korea. This paper aims to describe the accomplishments, challenges and future directions of disabled women's advocacy organizations in Korea. A qualitative design was employed to explore disabled women's perspectives.…

"Who Did What?": A Participatory Action Research Project to Increase Group Capacity for Advocacy

ERIC Educational Resources Information Center

Garcia-Iriarte, E.; Kramer, J. C.; Kramer, J. M.; Hammel, J.

2009-01-01

Background: This participatory action research (PAR) project involved a collaboration with a self-advocacy group of people with intellectual disabilities that sought to build group capacity for advocacy. Materials and Methods: This study used a focus group, sustained participatory engagement and a reflexive process to gather qualitative and…

Social Justice Advocacy in Rural Communities: Practical Issues and Implications

ERIC Educational Resources Information Center

Bradley, Joshua M.; Werth, James L., Jr.; Hastings, Sarah L.

2012-01-01

The professional literature related to social justice has increased, but there has been little discussion of the practical issues and implications associated with social advocacy. However, adding new roles will result in new considerations for counseling psychologists. The need to be attuned to how the practical aspects of advocacy intersect with…

76 FR 10942 - Open Meeting of the Taxpayer Advocacy Panel Volunteer Income Tax Assistance Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2011-02-28

... Volunteer Income Tax Assistance Project Committee AGENCY: Internal Revenue Service, Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Volunteer Income Tax Assistance... Act, 5 U.S.C. App. (1988) that a meeting of the Taxpayer Advocacy Panel Volunteer Income Tax...

76 FR 17996 - Open Meeting of the Taxpayer Advocacy Panel Volunteer Income Tax Assistance Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2011-03-31

... Volunteer Income Tax Assistance Project Committee AGENCY: Internal Revenue Service (IRS) Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Volunteer Income Tax...) that a meeting of the Taxpayer Advocacy Panel Volunteer Income Tax Assistance Project Committee will be...

75 FR 18955 - Open Meeting of the Taxpayer Advocacy Panel Volunteer Income Tax Assistance Issue Committee.

Federal Register 2010, 2011, 2012, 2013, 2014

2010-04-13

... Volunteer Income Tax Assistance Issue Committee. AGENCY: Internal Revenue Service (IRS) Treasury. ACTION: Corrected notice of meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Volunteer Income Tax... Taxpayer Advocacy Panel Volunteer Income Tax Assistance Issue Committee will be held Thursday, May 7, 2010...

75 FR 18955 - Open Meeting of the Taxpayer Advocacy Panel Tax Forms and Publications/MLI Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2010-04-13

... Tax Forms and Publications/MLI Project Committee AGENCY: Internal Revenue Service (IRS), Treasury... Publications/MLI Project Committee will be conducted. The Taxpayer Advocacy Panel is soliciting public comments... Taxpayer Advocacy Panel Tax Forms and Publications/MLI Project Committee will be held Thursday, May 13...

On the Relationship Between Suicide-Prevention and Suicide-Advocacy Groups.

ERIC Educational Resources Information Center

Battin, Margaret Pabst

Numerous advocacy groups concerned with "death with dignity" have formed in response to medical advances which extend the process of dying. Natural death legislation and the Living Will are but two examples of suicide advocacy for the terminally ill. These groups are emerging world-wide and range from conservative insistence on passive…

76 FR 6188 - Open Meeting of the Area 6 Taxpayer Advocacy Panel (Including the States of Idaho, Iowa...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-02-03

... Taxpayer Advocacy Panel is soliciting public comment, ideas, and suggestions on improving customer service... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 6 Taxpayer Advocacy... Dakota, Utah, Washington, and Wyoming) AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice...

76 FR 37197 - Open Meeting of the Area 6 Taxpayer Advocacy Panel (Including the States of Idaho, Iowa...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-06-24

... Taxpayer Advocacy Panel is soliciting public comment, ideas, and suggestions on improving customer service... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 6 Taxpayer Advocacy... Dakota, Utah, Washington, and Wyoming) AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice...

Salt Lake Skills Center Handicapped Advocacy Program. Summary Report.

ERIC Educational Resources Information Center

Hall, Bo; Armstrong, Terry L.

The Handicapped Advocacy Program (HAP) is an advocacy service for individuals with disabilities who are sponsored in skills training by the Utah Division of Rehabilitation Services (DRS). It has developed a system whereby DRS clients can be tracked throughout their tenure at the Salt Lake Skills Center. Other services include Skills Center…

Advocacy for Child Wellness in High-Poverty Environments

ERIC Educational Resources Information Center

Mullen, Carol A.

2014-01-01

Child wellness needs to be understood holistically so that children and youth from high-poverty environments can succeed in schooling and life. Teachers who foster advocacy in themselves are well equipped to teach students to take ownership of their own well-being. Such advocacy can enrich the classroom curriculum and mitigate the negative effects…

College Student Narratives about Learning and Using Self-Advocacy Skills

ERIC Educational Resources Information Center

Daly-Cano, Meada; Vaccaro, Annemarie; Newman, Barbara

2015-01-01

Self-advocacy is the ability to communicate one's needs and wants and to make decisions about the supports needed to achieve them (Stodden, Conway, & Chang, 2003). Research shows self-advocacy skills are related to academic performance and successful adaptation to college (Adams & Proctor, 2010; Getzel & Thoma, 2008; Hadley, 2006;…

The Tradition of Advocacy in the Yoruba Courts.

ERIC Educational Resources Information Center

Asante, Molefi Kete

1990-01-01

Examines the extensive system of advocacy (based on the idea of group consensus) among the Yoruba in Nigeria. Gives a detailed account of communicative forms and functions of advocacy in legal proceedings and their relationship to Yoruba culture. Explores how Yoruba people argue their cases and find harmony out of a context of disputations. (SR)

76 FR 37199 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-06-24

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

75 FR 55406 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2010-09-10

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS) Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

76 FR 6188 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-02-03

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

76 FR 45005 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-07-27

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS) Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

76 FR 63716 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-10-13

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS) Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

75 FR 47061 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2010-08-04

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

76 FR 17994 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-03-31

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

75 FR 25315 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2010-05-07

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

75 FR 11998 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2010-03-12

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of Meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

75 FR 4139 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2010-01-26

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

76 FR 2194 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-01-12

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS) Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

76 FR 22170 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-04-20

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

75 FR 7541 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2010-02-19

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

75 FR 62630 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2010-10-12

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

76 FR 32023 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-06-02

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of Meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

75 FR 39330 - Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California...

Federal Register 2010, 2011, 2012, 2013, 2014

2010-07-08

... DEPARTMENT OF THE TREASURY Internal Revenue Service Open Meeting of the Area 7 Taxpayer Advocacy Panel (Including the States of Alaska, California, Hawaii, and Nevada) AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Area 7 Taxpayer Advocacy...

Freedom of Speech and Press: Exceptions to the First Amendment

DTIC Science & Technology

2006-06-02

no protection to obscenity, child pornography, or speech that constitutes “advocacy of the use of force or of law violation ... where such advocacy is...2 Child Pornography...decided that the First Amendment provides no protection to obscenity, child pornography, or speech that constitutes “advocacy of the use of force or of

77 FR 55525 - Open Meeting of the Taxpayer Advocacy Panel Face-to-Face Service Methods Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2012-09-10

... Face-to-Face Service Methods Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Face-to-Face Service Methods Project Committee will be conducted. The Taxpayer Advocacy Panel is soliciting public comments, ideas, and...

77 FR 30590 - Open meeting of the Taxpayer Advocacy Panel Toll-Free Project Committee.

Federal Register 2010, 2011, 2012, 2013, 2014

2012-05-23

... Toll-Free Project Committee. AGENCY: Internal Revenue Service (IRS) Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Toll-Free Project Committee will be conducted. The.... (1988) that an open meeting of the Taxpayer Advocacy Panel Toll-Free Project Committee will be held...

77 FR 37102 - Open Meeting of the Taxpayer Advocacy Panel Toll-Free Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2012-06-20

... Toll-Free Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Toll-Free Project Committee will be conducted. The.... (1988) that an open meeting of the Taxpayer Advocacy Panel Toll-Free Project Committee will be held...

Autism Advocacy: A Network Striving for Equity

ERIC Educational Resources Information Center

Itkonen, Tiina; Ream, Robert

2013-01-01

In this exploratory case study, we examine the rise of autism on the policy agenda and the new generation of autism advocacy. We focus especially on interconnections between the rhetoric about autism in the media and the emergence and political effectiveness of Autism Speaks, the nation's largest autism advocacy group. We portray how…

76 FR 10944 - Open Meeting of the Taxpayer Advocacy Panel Earned Income Tax Credit Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2011-02-28

... Earned Income Tax Credit Project Committee AGENCY: Internal Revenue Service (IRS), Treasury. ACTION: Notice of meeting. SUMMARY: An open meeting of the Taxpayer Advocacy Panel Earned Income Tax Credit... meeting of the Taxpayer Advocacy Panel Earned Income Tax Credit Project Committee will be held Tuesday...

75 FR 4140 - Open Meeting of the Taxpayer Advocacy Panel Earned Income Tax Credit Project Committee

Federal Register 2010, 2011, 2012, 2013, 2014

2010-01-26

... Earned Income Tax Credit Project Committee AGENCY: Internal Revenue Service (IRS) Treasury. ACTION... Tax Credit Project Committee will be conducted. The Taxpayer Advocacy Panel is soliciting public... Advocacy Panel Earned Income Tax Credit Project Committee will be held Wednesday, February 24, 2010, at 1 p...

Increasing Effective Self-Advocacy Skills in Elementary Age Children with Physical Disabilities

ERIC Educational Resources Information Center

Avant, Mary Jane Thompson

2013-01-01

For students with physical and health disabilities, the development of self-advocacy skills is critical to their future success. Characteristics that may inhibit the development of self-advocacy skills in this population include reliance on others for assistance across multiple areas requiring physical abilities, deficits in communication skills,…

Weber's Critique of Advocacy in the Classroom: Critical Thinking and Civic Education.

ERIC Educational Resources Information Center

Weaver, Mark

1998-01-01

Discusses the four aspects of Max Weber's argument against including advocacy in the political science classroom. Believes that Weber's critique is a useful starting point for considering the issue in relation to contemporary education. Describes two models, critical thinking and civic education, that present advocacy in the political science…

A Media Advocacy Intervention Linking Health Disparities and Food Insecurity

ERIC Educational Resources Information Center

Rock, Melanie J.; McIntyre, Lynn; Persaud, Steven A.; Thomas, Karen L.

2011-01-01

Media advocacy is a well-established strategy for transmitting health messages to the public. This paper discusses a media advocacy intervention that raised issues about how the public interprets messages about the negative effects of poverty on population health. In conjunction with the publication of a manuscript illustrating how income-related…

Mental Health Professionals in Children's Advocacy Centers: Is There Role Conflict?

ERIC Educational Resources Information Center

Cross, Theodore P.; Fine, Janet E.; Jones, Lisa M.; Walsh, Wendy A.

2012-01-01

Two recent chapters in professional books have criticized children's advocacy centers for creating role conflict for mental health professionals because of their work with criminal justice and child protection professionals in children's advocacy centers as part of a coordinated response to child abuse. This article argues that these critiques…

The Northland fluoridation advocacy programme: an evaluation.

PubMed

Gowda, Sunitha; Thomas, David R

2008-12-01

On 20 July 2006, the Far North District Council resolved to fluoridate Kaitaia and Kaikohe. This was the first such initiative by any Territorial Local Authority (TLA) in New Zealand for 23 years, and resulted from a fluoridation advocacy programme. This paper describes the programme implementation, assesses its consistency with the principles of the Treaty of Waitangi, and critically examines the collaboration between the fluoride advocate and the key stakeholders. Process evaluation identified three main categories of programme implementation: policy advocacy, community action projects, and media advocacy. The collaboration of iwi, Maori health providers and the community suggests that the programme was consistent with the principles (partnership, participation and protection) ofthe Treaty ofWaitangi. Media advocacy played an important role in reflecting and engaging community views on fluoridation, and it influenced decision-making by the Far North District Council. The simultaneous, combined 'top-down and bottom-up' approach was an effective and successful strategy for fluoridation advocacy in the community. Less integrated approaches implemented on their own (such as the 'top down' approach in Whangarei and the 'bottom-up' approach in Dargaville) were not effective.

Crew Management Processes Revitalize Patient Care

NASA Technical Reports Server (NTRS)

2009-01-01

In 2005, two physicians, former NASA astronauts, created LifeWings Partners LLC in Memphis, Tennessee and began using Crew Resource Management (CRM) techniques developed at Ames Research Center in the 1970s to help improve safety and efficiency at hospitals. According to the company, when hospitals follow LifeWings? training, they can see major improvements in a number of areas, including efficiency, employee satisfaction, operating room turnaround, patient advocacy, and overall patient outcomes. LifeWings has brought its CRM training to over 90 health care organizations and annual sales have remained close to $3 million since 2007.

Peer, professional, and public: an analysis of the drugs policy advocacy community in Europe.

PubMed

O'Gorman, Aileen; Quigley, Eoghan; Zobel, Frank; Moore, Kerri

2014-09-01

In recent decades a range of advocacy organisations have emerged on the drugs policy landscape seeking to shape the development of policy at national and international levels. This development has been facilitated by the expansion of 'democratic spaces' for civil society participation in governance fora at national and supranational level. However, little is known about these policy actors - their aims, scope, organisational structure, or the purpose of their engagement. Drug policy advocacy organisations were defined as organisations with a clearly stated aim to influence policy and which were based in Europe. Data on these organisations was collected through a systematic tri-lingual (English, French and Spanish) Internet search, supplemented by information provided by national agencies in the 28 EU member states, Norway and Turkey. In order to differentiate between the diverse range of activities, strategies and standpoints of these groups, information from the websites was used to categorise the organisations by their scope of operation, advocacy tools and policy constituencies; and by three key typologies - the type of advocacy they engaged in, their organisational type, and their advocacy objectives and orientation. The study identified over two hundred EU-based advocacy organisations (N=218) which included civil society associations, NGOs, and large-scale alliances and coalitions, operating at local, national and European levels. Three forms of advocacy emerged from the data analysis - peer, professional and public policy. These groups focused their campaigns on practice development (harm reduction or abstinence) and legislative reform (reducing or strengthening drug controls). The findings from this study provide a nuanced profile of civil society advocacy as a policy community in the drugs field; their legitimacy to represent cases, causes, social values and ideals; and their focus on both insider and outsider strategies to achieve their goals. The level of convergence and divergence in Europe in relation to policy positions on service provision ethos and drug control regulation is indicated. Copyright © 2014 Elsevier B.V. All rights reserved.

Intensive Care Nurses' Attitude on Palliative and End of Life Care.

PubMed

Tripathy, Swagata; Routray, Pragyan K; Mishra, Jagdish C

2017-10-01

Intensive Care Unit (ICU) nurses have a vital role in the implementation of end of life (EOL) care. There is limited data on the attitude of ICU nurses toward EOL and palliation. This study aimed to investigate knowledge, attitude, and beliefs of intensive care nurses in eastern India toward EOL. A self-administered questionnaire was distributed to delegates in two regional critical care nurses' training programs. Of 178 questionnaires distributed, 138 completed, with a response rate of 75.5*. About half (48.5*) had more than 1 year ICU experience. A majority (81.9*) agreed that nurses should be involved in and initiate (62.3*) EOL discussions. Terms "EOL care or palliative care in ICU" were new for 19.6*; 21* and 55.8* disagreed with allowing peaceful death in terminal patients and unrestricted family visits, respectively. Work experience was associated with wanting unrestricted family visitation, discontinuing monitoring and investigations at EOL, equating withholding and withdrawal of treatment, and being a part of EOL team discussions ( P = 0.005, 0.01, 0.01, and 0.001), respectively. Religiousness was associated with a greater desire to initiate EOL discussions ( P = 0.001). Greater emphasis on palliative care in critical care curriculum may improve awareness among critical care nurses.

A beginner’s guide to getting involved in science advocacy

PubMed Central

Ruppersburg, Chelsey Chandler; York, Amanda L.

2016-01-01

Every scientist in the United States likely has a story of how the federal funding crisis for biomedical research has affected him or her personally. The sharing of these powerful anecdotes will enable policy makers to fully grasp the extent to which the decline in federal funding has negatively affected the scientific community. However, many scientists do not know where to begin or are uncertain that their advocacy efforts will have an impact. In an effort to encourage more scientists to become involved in science advocacy, we describe how to form and maintain a student science advocacy group. PMID:27079651

Advocacy Communication and Social Identity: An Exploration of Social Media Outreach.

PubMed

Ciszek, Erica L

2017-01-01

Increasingly, advocacy organizations employ social networking sites as inexpensive and often effective ways to disseminate outreach messages. For groups working to reach lesbian, gay, bisexual, transgender, and queer (LGBTQ) youth, social media provide key platforms for connecting with target audiences. Although these young people increasingly utilize social media, little is known about how digital advocacy campaigns influence their sexual identity formation. This article applies concepts of social identity to examine how LGBTQ youth understand advocacy campaigns, how they perceive LGBTQ as a social category presented in campaigns, and what values they assign to LGBTQ group membership.

Teaching social determinants of child health in a pediatric advocacy rotation: small intervention, big impact.

PubMed

Klein, Melissa; Vaughn, Lisa M

2010-01-01

Traditionally, medical education does not specifically address the social determinants of health or how to advocate for families' cultural, social or economic needs in spite of our increasingly diverse society. This article describes a new social-legal curriculum added to a Pediatric Resident's Advocacy course. Pediatric interns completed 'Memos To Myself' after the Advocacy rotation. The curriculum impacted residents' (1) realization regarding family circumstances; (2) reflections regarding self and personal practice; and (3) knowledge about advocacy issues and community partnerships for solutions. This curriculum raised awareness about topics that are traditionally not covered in medical education.

[French psychiatric therapeutic system for adults, an overview of mental health legislations].

PubMed

Oshima, Kazunari; Abe, Yuichiro

2012-01-01

In this article, the authors present an overview of the current French psychiatric therapeutic system for adults and legislation focusing on hospitalization procedures and patients' rights advocacy. The aim of this article is to compare the psychiatric therapeutic system in France with that in Japan and to reflect on problems related to involuntary hospitalization in Japan, especially "hospitalization for medical care and protection." French psychiatry has been developing for about 150 years, and is based on the 1838 Statute (la loi 1838). Historically, J-E. Esquirol, defined two modalities of hospital admission: voluntary hospitalization and compulsory hospitalization. The 1838 statute also stipulated in-patients' rights. In the 1960's, the sector psychiatric therapeutic system, "sectorisation," was introduced in France. According to this system, the continuity of treatment is regarded as important and all people with psychiatric disorders are treated continuously by the same therapeutic team in a sector that comprised of 70,000 inhabitants. Following this, the psychiatric ordinance of 1986 defined additionally 12 types of new therapeutic structures. It elaborated French community psychiatry with various intra-/extra-hospital institutions, and also encouraged "hospitalization with consent" (Hospitalisation libre), thus placing more importance on the subjective judgements and autonomy of patients. In accord with "sectorisation", the law of 1990 concerning hospitalization and the advocacy of inpatients' rights defined new procedures of psychiatric hospitalization: "hospitalization at the request of a third party" (Hospitalisation sur demande d'un tiers) and "compulsory hospitalisation" (Hospitalisation d'office). The reform of the law in 2011 went so far as to change the name of each category of admission: i.e. substituting "psychiatric medical care" for "hospitalisation". It also introduces an evaluation system to review involuntary hospitalization after 24 hours, 72 hours and 15 days during the early stages of hospitalization. This demonstrates the importance of judicial inspection in advocating for clients in determining the continuation of the psychiatric hospitalization. In discussion, we propose three suggestions in terms of quality of treatment and patients' rights advocacy concerning the future reform of psychiatric legislation in Japan: 1) institute an evaluation system to examine the validity of involuntary hospitalization, especially in the early phase of hospitalization; 2) recognize the necessity of making third parties such as Psychiatric Review Board or the courts responsive to the needs of psychiatric patients 3) ameliorate the Japanese Protector System for patients to bring it in line with contemporary contractual treatment of patients and to show a greater respect for patients' autonomy.