Advancing Health Policy Research Articles

Policy education in a research-focused doctoral nursing program: Power as knowing participation in change.

Nurses have moral obligations incurred by membership in the profession to participate knowingly in health policy advocacy. Many barriers have historically hindered nurses from realizing their potential to advance health policy. The contemporary political context sets additional challenges to policy work due to polarization and conflict. Nursing education can help nurses recognize their role in advancing health through political advocacy in a manner that is consistent with disciplinary knowledge and ethical responsibilities. In this paper, the authors describe an exemplar of Elizabeth Barrett's "Power as Knowing Participation in Change" theory as a disciplinary lens within a doctoral nursing health policy course. Barrett (radically) emphasizes "power as freedom" instead of "power as control." This approach is congruent with nursing disciplinary values and enhances awareness of personal freedom and building collaborative relationships in the policy process. The theory was used in concert with other traditional policy content and frameworks from nursing and other disciplines. We discuss the role of nursing ethics viewed as professional responsibility for policy action, an overview of Barrett's theory, and the design of the course. Four student reflections on how the course influenced their thinking about policy advocacy are included. While not specific to policymaking, Barrett's theory provides a disciplinary grounding to increase students' awareness of freedom and choices in political advocacy participation. Our experience suggests that Barrett's work can be fruitful for enhancing nurses' awareness of choices to participate in change across settings.

Supporting Antiracism Through the Thoughtful Conduct, Evaluation, and Use of Research

Supporting Antiracism Through the Thoughtful Conduct, Evaluation, and Use of Research

Evidence-Based Oncology™ Special Issue: ASCO Recap.

The annual special issue of Evidence-Based Oncology™, a publication of The American Journal of Managed Care® (AJMC), features coverage of the 2022 Annual Meeting of the American Society of Clinical Oncology, held June 3-7, 2022, in Chicago, Illinois. Clinical trials presented during the meeting and summarized in the issue include DESTINY-Breast04, DETERMINATION, SHINE, and ECHELON-1. The issue features coverage from sessions addressing current issues in health policy and cancer care delivery, such as improving diversity in clinical trials and managing financial toxicity. Sections of the special issue include Advancing Health Equity, Breast Cancer, Solid Tumors, Blood Cancers, and Health Policy & Delivery. A final section features clinical findings presented by scientists affiliated with Strategic Alliance Partners of AJMC. Each issue section includes an interview with a key opinion leader participating in the meeting.

Advancing Health Policy and System Research: Lessons for Resilient Health System in Nepal.

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An assessment of perceived prioritisation and resource allocation for health policy and systems research in West Africa.

Globally, adequate funding is a strong underpinning to advance health policy and systems research (HPSR) and ensure its impact on strengthening health systems. This study examined the perceived prioritisation, and resource allocation for HPSR in West Africa. A desk review was conducted of literature related to HPSR funding published between January 2010 and December 2019, sourced from various databases and government websites. This was followed by in-depth interviews with senior decision makers and HPSR and non-HPSR research leaders (n = 33) across nine West African countries: Benin, Burkina Faso, Côte d'Ivoire, Gambia, Ghana, Liberia, Nigeria, Senegal and Sierra Leone. The majority of the study participants were from ministries of health in their countries (66.7%). All countries except Sierra Leone had a program dedicated to health policy research and/or health planning/program research. There was no specific funding for health research nor HPSR in most countries and a mixed model (demand and supply led) was employed in most instances. HPSR was only considered a priority in two of the nine countries and specific funding for it was non-existent in all nine countries. In all countries, donor agencies played predominant roles in setting health research priorities and resource allocation decisions. Infectious disease and maternal/child health research were the research categories with the highest level of funding. There was limited capacity for HPSR, with a pronounced gap between researchers and policy makers. Stakeholder advocacy, basket funding for health research, multi-stakeholder institutional and individual HPSR capacity building were the major recommendations for improving the status and funding of HPSR. This study showed that both health research and HPSR were considered low priorities, with no designated funding (budget line) and inadequacy of funding disbursement in the surveyed countries in West Africa. Health research was largely conducted as prioritised and funded by the donor agencies. Given donor fatigue and the transitioning of donor funding, and the pivotal role of HPSR in strengthening health systems, there is an urgent need for West African states to commit to prioritising and funding HPSR and HPSR capacity development.

Medical Coordination Rescue Members' and Ambulance Nurses' Perspectives on a New Model for Mass Casualty and Disaster Management and a Novel Terror Attack Mitigation Approach in the Netherlands: A Qualitative Study.

Mass-casualty incidents (MCIs), specifically incidents with chemical, biological, radiological, and nuclear agents (CBRN) or terrorist attacks, challenge medical coordination, rescue, availability, and adequate provision of prehospital and hospital-based emergency care. In the Netherlands, a new model for Mass Casualty and Disaster Management (MCDM) along with a Terror Attack Mitigation Approach (TAMA) was introduced in 2016. The objective of this study was to provide insight in the first experiences of health policy advisors and managers with a medical rescue coordinator and ambulance nursing background regarding the new MCDM and TAMA in order to identify strengths and pitfalls in emergency preparedness and to provide recommendations for improvement. The study had a qualitative design and was performed from January 2017 through June 2018. Purposeful sampling was used and the inclusion comprehended health policy advisors and managers with a medical rescue coordinator and ambulance nursing background involved in emergency preparedness. The respondents were interviewed semi-structured and the researchers used a topic list that was based on the literature and content of the newly introduced model and approach. All interviews were typed out verbatim and qualitative content analyzing was used in order to identify relevant themes. Respondents based their perceptions on large-scale training exercises, as MCDM and TAMA were not yet used during MCIs. Perceived issues of MCDM were the two-tiered triage system, the change in focus from "stay and play" towards "scoop and run," difficulties with new tasks and roles of professionals, and improvement in material provision. Regarding TAMA, all respondents supported the principles (do the most for the most; scoop and run; acceptable personal risk; never walk alone; and standard operational procedure); however, the definitions were lacking clarity while the awareness of optimal personal safety of professionals was absent.As there are currently regional differences in the level of implementation of MCDM and TAMA, this may pose a risk for an optimal inter-regional collaboration. The conclusions refer to experiences of professionals in the Netherlands. Elements of the MCDM and TAMA were highly appreciated and seemed to improve emergency preparedness, while other aspects needed further attention, training, and integration in daily routine. The Netherlands' MCDM model and TAMA will need continuous systematic evaluation based on (inter)national performance criteria in order to underpin the useful and effective elements and to improve the observed pitfalls in emergency preparedness.

An Introduction to the International Journal of Particle Therapy's Special Issue on Particle Therapy for Head and Neck Malignancies

Particle therapy has emerged as a standard-of-care treatment option in the management of head and neck malignancies owing to its unique physical and biologic properties that lead to improved clinical outcomes. Likewise, the value of particle therapy in the management of head and neck tumors has rapidly evolved over the past decade, and head and neck cancer management currently represents one of the most common indications for the use of proton therapy.It is therefore my privilege to introduce this special IJPT Particle Therapy for Head and Neck Malignancies issue, which offers 33 articles by renowned international authors knowledgeable in head and neck cancer management, making it, to date, the most definitive guide to this new standard of care. The research presented herein expands our knowledge of the biologic enhancement effect of proton therapy, the physical properties that require unique and complex treatment planning approaches, and the resulting improvement in long-term clinical outcomes. Further clarity has been provided on the use of advanced Monte Carlo and LET-based treatment planning and quality assurance methods for emerging treatment centers, thereby minimizing the risk of unnecessary side effects and complications. Additional opportunities are offered for personalization of particle therapy through combining its biologic enhancement effects with concurrent systemic therapy. From pediatrics to adults, the issue seeks to advance health policy and improve patient access with model-based selection, activity-based costing, cost-effectiveness, financial toxicity, and work productivity outcomes.I would like to dedicate this special issue to our head and neck cancer patients worldwide who have participated in the clinical trials and research protocols that have resulted in these publications, thereby advancing our knowledge and standard of care for future patients. I would also like to dedicate this special issue to my parents and family, who have provided constant support to see this project to completion.We are most grateful for the efforts of our outstanding guest editors in this endeavor: Paul M. Busse, MD, PhD, from Massachusetts General Hospital; Lei Dong, PhD, from the Hospital of the University of Pennsylvania; Robert L. Foote, MD, from Mayo Clinic – Rochester; Piero Fossati, MD, MS, from MedAustron; Hans Langendijk, MD, PhD, from University Medical Centre Groningen; Nancy Y. Lee, MD, from Memorial Sloan Kettering Cancer Center; Jiade Lu, MD, MBA, from Shanghai Proton/Heavy Ion Center; Hsiao-Ming Lu, PhD, from the Hefei Ion Medical Center; Jun-Etsu Mizoe, MD, PhD, from Osaka Heavy Ion Therapy Center; Naruhiro Matsufuji, PhD, from the National Institutes for Quantum and Radiological Science and Technology National Institute of Radiological Sciences, Japan; Samir H. Patel, MD, of the Mayo Clinic – Phoenix; Juliette Thariat, MD, PhD, from Centre Baclesse / ARCHADE – Normandie Université; and Samir Patel, MD, of the Cross Cancer Institute and Stollery Children's Hospital, University of Alberta.I also wish to thank IJPT Editor-in-Chief Dr. Nancy Mendenhall and Operating Editor Dr. Bill Mendenhall for their support of this important issue; Managing Editor Jessica Kirwan and Journal Manager Liza Winthrop Grammel, who worked tirelessly to see it to completion; Christine Wogan, for her substantive editing expertise; and Sasha F. Watt for her photography of the cover of the special edition.Finally, I would like to personally thank my gracious patient, Mr. Ronald L. Roberts, who kindly provided consent to use his image and name, and whose photograph and medical images are represented on the cover of this head and neck special issue. For tumors in this complex paranasal sinus area of the head and neck, proton therapy has become standard of care and is crucial to the pursuit of cure, cosmesis, and clear vision in this unique time of the COVID-19 pandemic.

Stakeholder perspectives on clinical research related to therapies for rare diseases: therapeutic misconception and the value of research

BackgroundFor many rare diseases, few treatments are supported by strong evidence. Patients, family members, health care providers, and policy-makers thus have to consider whether to accept, recommend, or fund treatments with uncertain clinical effectiveness. They must also consider whether and how to contribute to clinical research that may involve receiving or providing the therapy being evaluated.ObjectiveTo understand why and how patients and families with rare metabolic diseases, specialist metabolic physicians, and health policy advisors choose whether to participate in studies and how they use and value research.MethodsWe conducted separate focus group interviews with each stakeholder group (three groups in total); two groups were conducted by telephone and the third was held in-person. Participants were recruited using purposive sampling. We analyzed each interview transcript sequentially using a qualitative description approach to inductively identify key themes. Several strategies to ensure credibility and trustworthiness were used including debriefing sessions after each focus group and having multiple team members review transcripts.ResultsFour patients/caregivers, six physicians, and three policy advisors participated. Our findings did not support conventional perspectives that therapeutic misconception (gaining access to treatment) is the main motivating factor for patients/caregivers to participate in clinical research. Rather, patients’/caregivers’ expressed reasons for participating in research included advancing science for the next generation and having an opportunity to share their experiences. Patients/caregivers and physicians described the difficulties in weighing risks versus benefits of accepting treatments not well-supported by evidence. Physicians also reported feeling conflicted in their dual role as patient advisor/advocate and evaluator of the evidence. Policy advisors were primarily focused on critically appraising the evidence to make recommendations for the health system.ConclusionsStakeholders differ in their perspectives on rare disease research but share concerns about the risks versus benefits of therapies when making individual- and population-level decisions.

"Services Not Mausoleums": Race, Politics, and the Concept of Community in American Medicine (1963-1970).

A romance with the concept of community has long characterized activist healthcare movements and has more recently been taken up by academic medical centers (AMCs) as a sign of virtuous civic engagement. During the late 1960s, the word community, as deployed by administrators at prestigious AMCs, became increasingly politicized, commodified and racialized. Here, we analyze how the concept of community was initially framed in the 1963 Community Mental Health Centers Act, the first legislation to establish community mental health centers in America. We then examine the Health Policy Advisory Center's analysis of the proposed Washington Heights Community Mental Health Center to be run by Columbia University's College of Physicians and Surgeons, an institution that had historically neglected residents' health needs. Community pushback against Columbia's plan to build a multi-block center, amplified by medical students and residents critical of the professionalized community mental health movement, escalated in the late 1960s, leading the city's planning board to reject Columbia and approve a community council's plan for preventive and rehabilitative local services. These conflicting overtones of "community" still inform understandings of the word in medicine today; thus, a critical historical analysis of "community" is warranted.

Advancing Health Policy and Advocacy Education in Medical School through a Student-run Elective

Introduction: Training medical students in the policy topics of healthcare economics, delivery systems, disparities, and reform helps to prepare them for the growing role of advocacy in medicine. We used a near-peer educational model to create an elective to advance learners’ policy knowledge and advocacy skills, while simultaneously offering student directors hands-on experience in educational program development. Methods: The 4-week elective for fourth year medical students included weekly readings, policy seminars, advocacy workshops, and journal clubs. Longitudinally, students prepared for a policy debate and prepared a research project or Op-Ed article on a healthcare disparity topic of their choice. The elective was designed, coordinated, and implemented by a team of first, second, third, and fourth-year medical students with faculty adviser oversight. Pre- and post-surveys were utilized to assess student learners’ knowledge of subject material and their perceptions of the effectiveness of the curriculum. Student directors self-assessed their confidence with the subject material and acquired skill in educational program development. Results: Student learners (n=6) noted significant improvement in their knowledge of health policy (P=0.0002) and advocacy (P=0.0064). They also reported improvement in several subtopics under policy and advocacy, with significant improvements seen in healthcare reform (P=0.0131) and writing skills (P=0.0099). Student directors (n=4) reported improved skills in curriculum development, educational evaluation, and leadership. Discussion: This novel student-run elective provided effective training in health policy and advocacy that extends beyond traditional curricula in medical school. Employing a near-peer model, the elective offers a sustainable system to educate interested students in these subjects and provide student directors unique experience in medical education. Further evaluation of future iterations will help determine the effectiveness of the curriculum in advancing individual policy and advocacy subtopics to guide future curricular modifications.

The Importance of Lobbying to Advance Health and Science Policy.

Government funding and policies are critical to academic medicine. Publicfunds sustain the education, research, and patient care missions of medical schools and teaching hospitals, and regulations govern the fulfillment of those missions. Consequently, both individuals and institutions often need to engage with those who develop these policies, including through lobbying. Lobbying fulfills a constitutionally protected right to petition the government for a redress of grievances, despite perceptions that it is instead only back-room dealing and insider influence. As an important part of the system of government in the United States, lobbying is subject to complex regulations, and failure to comply can result in substantial penalties, particularly for tax-exempt entities, of which almost all medical schools and the large majority of teaching hospitals are. In this Invited Commentary, the author briefly summarizes these regulations to complement the article in this issue by Lynch and colleagues. He then argues that while regulatory compliance is essential, it is not the same as lobbying effectively. For individual academic researchers to do that involves a number of considerations, including whether to coordinate their efforts with those of their institution to leverage the expertise and resources of the institution, to maximize their chances for success with policymakers.

Hogyan készült a Habsburg-birodalom 1770-ik évi Egészségügyi Főszabályzatának magyar változata?

The General Public Health Law (Hauptsanitätsnormativ) as a codified summary of preceding two decades legislation of the 18th century was enacted by Maria Theresa in the Habsburg imperial capital Vienna January 2, 1770. Since in the Hungarian Kingdom all imperial legislation became effective only by the concerning decree of the Royal Governor’s Council, there started a long procedure of application between Vienna and Pozsony (Presburg) the then 109capital of Hungary. Documents of this procedure are available among the scriptures of Royal Governor’s Council in the Central Institute of National Archives of Hungary. The Latin (than official language) version of General Public Health Law titled as Generale Normativum in Re Sanitatis differed necessarily from the original context as a result of specialities of the Hungarian state and local administration. Regarding medical services, because there was no operating medical faculty in the single domestic university, the Hungarian part had a week bargaining position thus the imperial health policy advisors neglected easily all its propositions. Nevertheless, the Governor’s Council tried to analyse critically the rules for medical professionals’ (physicians, surgeons and midwives) services. The present study concerns the one year period of Hungarian legal application based on official letters, commission’s minutes and professional opinions by critical pondering of the dedicated scriptures.

Advancing health policy education in nursing: American Association of Colleges of Nursing Faculty Policy Think Tank.

Based upon an awareness of the need to increase its policy footprint, the American Association of Colleges of Nursing's (AACN) Board of Directors convened a think tank of nurse experts in the field of policy curriculum to advise the Board. The goal of the think tank was to review the current landscape, analyze trends, and create a set of recommendations for AACN's Board to consider. The Faculty Policy Think Tank (FPTT) met between 2016 and 2017 to review and reflect on methods to increase expertise of nursing faculty and students in health policy and make recommendations to the AACN Board to advance the agenda of the organization, member schools, and the profession. This article describes the methods and processes the Think Tank employed to develop a set of recommendations for the AACN Board of Directors.

Non-use of sunscreen among adults and the elderly in southern Brazil

BackgroundOne of the main prevention methods against skin cancer is the use of sunscreen; however, incidence of this disease has not declined despite prevention campaigns. ObjectiveInvestigate the prevalence of non-use of sunscreen and its associated factors. MethodA population-based cross-sectional study with individuals aged 18 years or over living in the urban area. Conducted between April and July of 2016. Participants were interviewed about socioeconomic, demographic, and behavioral questions. Non-use of sunscreen was considered as the outcome. For multivariate analysis, Poisson regression with robust adjustment for variance was used. ResultsAmong the 1300 participants, prevalence of non-use of sunscreen was 38.2% (95% CI: 34.6–41.8). The variables independently associated with the outcome were male sex, older age, brown or black skin color, lower income, fewer years of education, no physical activity in leisure time, no medical consultations in the last year, and self-perception of health as regular or poor. Study limitationsThe prevalence may be underestimated by reports of more use of sunscreen than actually used, which could increase the figure in the outcome. ConclusionIt was estimated that about four out of ten adults and elderly do not use sunscreen in this sample. Prevention strategies are needed to advance health policy and ensure that sun protection options are easily accessible.

The Interdisciplinary Research Group on Nursing Issues: Advancing Health Services Research, Policy, Regulation, and Practice

The Interdisciplinary Research Group on Nursing Issues: Advancing Health Services Research, Policy, Regulation, and Practice

Evaluating user experiences of a clearing house for health policy and systems.

Timely access to evidence increases the prospects for evidence informed decision making. We evaluated user experiences of a Clearing House for Health Policy with the aim of increasing access to evidence about the Uganda health system and interventions. We conducted in-depth interviews with 15 potential users including policymakers, health policy advisors, health managers and researchers to provide evidence on their experience with the clearinghouse. On average participants took 20minutes to first navigate the site and 45minutes to perform search tasks and complete the interview. Most respondents successfully searched for information with accuracy and completeness in a short time. Participants commended the performance and expressed high regard for the credibility of the clearinghouse. The majority felt that using the resource was worth their effort. The clearinghouse provided appropriate functionalities for information searching. Navigating and finding information from the site was achievable. However, inadequate background information about the site and lack of current information were widely reported. Our paper provides insights on the issues that can be addressed to improve online resources for health policy and system information in a limited resource setting. Users' experience of such resources can be improved by regularly appraising and appropriately indexing the contents, and optimising the capacity to customise information.

\u201cGetting ready for the adult world\u201d: how adults with spinal muscular atrophy perceive and experience healthcare, transition and well-being

BackgroundSpinal muscular atrophy (SMA) has profound implications across a lifetime for people with the condition and their families. Those affected need long-term multidisciplinary medical and supportive care to maintain functional mobility, independence and quality of life. Little is known about how adults with SMA experience healthcare, or the components of care perceived as important in promoting well-being. The purpose of this study was to use qualitative research methodology to explore the lived experiences of healthcare and wellbeing of adults with SMA. Purposive sampling was used to recruit adolescents and adults with SMA, their parents and partners. Face-to-face or telephone-based semi-structured interviews were recorded and analysed using inductive thematic analysis.ResultsAcross a total of 25 interviews (19 people with SMA, 5 parents, 1 partner) many participants described disengagement from health services and major gaps in care throughout adulthood. Disengagement was attributed to the perceived low value of care, as well as pragmatic, financial and social barriers to navigating the complex healthcare system and accessing disability services. Adults with SMA valued healthcare services that set collaborative goals, and resources with a positive impact on their quality of life. Mental health care was highlighted as a major unmet need, particularly during times of fear and frustration in response to loss of function, social isolation, stigma, and questions of self-worth. Alongside this, participants reported resilience and pride in their coping approaches, particularly when supported by informal networks of family, friends and peers with SMA.ConclusionsThese findings provide insight into the lived experiences, values and perspectives of adults with SMA and their carers, revealing major, ongoing unmet healthcare needs, despite many realising meaningful and productive lives. Findings indicate the necessity of accessible, patient- and family-centered multidisciplinary care clinics that address currently unmet physical and mental health needs. Understanding the lived experiences of people with SMA, particularly during times of transition, is critical to advancing health policy, practice and research. Future studies are needed to quantify the prevalence, burden and impact of mental health needs whilst also exploring potential supportive and therapeutic strategies.

Advancing Health Policy and Program Research in Diabetes: Findings from the Natural Experiments for Translation in Diabetes (NEXT-D) Network.

To advance our understanding of the impacts of policies and programs aimed at improving detection, engagement, prevention, and clinical diabetes management in the USA, we synthesized findings from a network of studies that used natural experiments to evaluate diabetes health policies and programs. Studies from the Natural EXperiments for Translation in Diabetes (NEXT-D) network used rigorous longitudinal quasi-experimental study designs (e.g., interrupted time series) and analytical methods (e.g., difference-in-differences) to augment causal inference. Investigators partnered with health system stakeholders to evaluate whether glucose testing rates changed from before-to-after clinic interventions (e.g., integrating electronic screening decision prompts in New York City) or employer programs (e.g., targeted messaging and waiving copayments for at-risk employees). Other studies examined participation and behavior change in low- (e.g., wellness coaching) or high-intensity lifestyle modification programs (e.g., diabetes prevention program-like interventions) offered by payers or employers. Lastly, studies assessed how employer health insurance benefits impacted healthcare utilization, adherence, and outcomes among people with diabetes. NEXT-D demonstrated that low-intensity interventions to facilitate glucose testing and enhance engagement in lifestyle modification were associated with small improvements in weight but large improvements in screening and testing when supported by electronic health record-based decision-support. Regarding high-intensity diabetes prevention program-like lifestyle programs offered by payers or employers, enrollment was modest and led to weight loss and marginally lower short-term health expenditures. Health plans that incentivize patient behaviors were associated with increases in medication adherence. Meanwhile, shifting patients to high-deductible health plans was associated with no change in medication use and preventive screenings, but patients with diabetes delayed accessing healthcare for acute complications (e.g., cellulitis). Findings were more pronounced among lower-income patients, who experienced increased rates and acuity of emergency department visits for diabetes complications and other high-severity conditions. Findings from NEXT-D studies provide informative data that can guide programs and policies to facilitate detection, prevention, and treatment of diabetes in practice.

Advancing Health Policy for Older Americans: How the Health and Aging Policy Fellows Convert Academic Expertise into Viable Policy Solutions

Advancing Health Policy for Older Americans: How the Health and Aging Policy Fellows Convert Academic Expertise into Viable Policy Solutions

Advancing Health Policy for Older Americans

Advancing Health Policy for Older Americans