Moving towards social inclusion: Engaging rural voices in priority setting for health.

BACKGROUND: Achieving universal health coverage (UHC) in the context of limited resources will require prioritising the most vulnerable and ensuring health policies and services are responsive to their needs. One way of addressing this is through the engagement of marginalised voices in the priority setting process. Public engagement approaches that enable group level deliberation as well as individual level preference capturing might be valuable in this regard, but there are limited examples of their practical application, and gaps in understanding their outcomes, especially with rural populations. OBJECTIVE: To address this gap, we implemented a modified priority setting tool (Choosing All Together-CHAT) that enables individuals and groups to make trade-offs to demonstrate the type of health services packages that may be acceptable to a rural population. The paper presents the findings from the individual choices as compared to the group choices, as well as the differences among the individual choices using this tool. METHODS: Participants worked in groups and as individuals to allocate stickers representing the available budget to different health topics and interventions using the CHAT tool. The allocations were recorded at each stage of the study. We calculated the median and interquartile range across study participants for the topic totals. To examine differences in individual choices, we performed Wilcoxon rank sum tests. RESULTS: The results show that individual interests were mostly aligned with societal ones, and there were no statistically significant differences between the individual and group choices. However, there were some statistically significant differences between individual priorities based on demographic characteristics like age. DISCUSSION: The study demonstrates that giving individuals greater control and agency in designing health services packages can increase their participation in the priority setting process, align individual and community priorities, and potentially enhance the legitimacy and acceptability of priority setting. Methods that enable group level deliberation and individual level priority setting may be necessary to reconcile plurality. The paper also highlights the importance of capturing the details of public engagement processes and transparently reporting on these details to ensure valuable outcomes. PUBLIC CONTRIBUTION: The facilitator of the CHAT groups was a member from the community and underwent training from the research team. The fieldworkers were also from the community and were trained and paid to capture the data. The participants were all members of the rural community- the study represents their priorities.

CHAT SA: Modification of a Public Engagement Tool for Priority Setting for a South African Rural Context.

BACKGROUND: Globally, as countries move towards universal health coverage (UHC), public participation in decisionmaking is particularly valuable to inform difficult decisions about priority setting and resource allocation. In South Africa (SA), which is moving towards UHC, public participation in decision-making is entrenched in policy documents yet practical applications are lacking. Engagement methods that are deliberative could be useful in ensuring the public participates in the priority setting process that is evidence-based, ethical, legitimate, sustainable and inclusive. Methods modified for the country context may be more relevant and effective. To prepare for such a deliberative process in SA, we aimed to modify a specific deliberative engagement tool - the CHAT (Choosing All Together) tool for use in a rural setting. METHODS: Desktop review of published literature and policy documents, as well as 3 focus groups and modified Delphi method were conducted to identify health topics/issues and related interventions appropriate for a rural setting in SA. Our approach involved a high degree of community and policy-maker/expert participation. Qualitative data were analysed thematically. Cost information was drawn from various national sources and an existing actuarial model used in previous CHAT exercises was employed to create the board. RESULTS: Based on the outcomes, 7 health topics/issues and related interventions specific for a rural context were identified and costed for inclusion. These include maternal, new-born and reproductive health; child health; woman and child abuse; HIV/AIDS and tuberculosis (TB); lifestyle diseases; access; and malaria. There were variations in priorities between the 3 stakeholder groups, with community-based groups emphasizing issues of access. Violence against women and children and malaria were considered important in the rural context. CONCLUSION: The CHAT SA board reflects health topics/issues specific for a rural setting in SA and demonstrates some of the context-specific coverage decisions that will need to be made. Methodologies that include participatory principles are useful for the modification of engagement tools like CHAT and can be applied in different country contexts in order to ensure these tools are relevant and acceptable. This could in turn impact the success of the implementation, ultimately ensuring more effective priority setting approaches.

Using Public Deliberation to Set Priorities: The Case of COVID-19 Vaccine Access in New York City.

CONTEXT: The COVID-19 pandemic has resulted in a record number of deaths in the United States and tremendous economic and personal strain. During 2020, in anticipation of a vaccine to slow the spread of disease, local and state governments in the United States developed plans for vaccine prioritization, given a limited initial supply. Recognizing the challenges inherent in prioritization, the New York City (NYC) health department sought guidance from members of the public about the fairest approach to early-stage vaccine distribution. OBJECTIVE: To solicit recommendations from NYC residents on priorities regarding vaccine access for essential worker occupations, considering risk factors and preferred approaches to fairness. IMPLEMENTATION: Five public deliberations were conducted with NYC residents (N = 91). Participants heard presentations on the COVID-19 vaccine, the local distribution of illness and death, and approaches to fairness in the context of deliberating on priorities for 6 essential worker occupations and 4 risk factors. Discussions were transcribed, and transcriptions were coded and analyzed using preidentified and emergent themes. Pre- and post-surveys, focused on factors relevant to prioritization, were administered during each public deliberation. RESULTS: Recommendations for prioritization emphasized risk of severe morbidity and mortality, and work and neighborhood conditions with fewer protections (eg, in-person work, exposure to many people). Participants prioritized elementary schoolteachers, grocery store workers, and bus drivers, underlying health conditions, and neighborhood of residence. Participants focused on equity, recognizing that those at highest risk were largely low-income populations of color and individuals living in low-resourced neighborhoods. CONCLUSIONS: Participants' focus on equity, and acknowledgment of racial and ethnic disparities, revealed a nuanced understanding of the broader determinants of health. Recommendations reinforced the NYC health department's approach to vaccine distribution. PUBLIC HEALTH IMPLICATIONS: Results from these public deliberations confirmed community support for approaches prioritizing health equity, recognizing both societal and personal factors affecting vulnerability to poor health.

Deliberative engagement methods on health care priority-setting in a rural South African community.

Public engagement in priority-setting for health is increasingly recognized as a means to ensure more ethical, inclusive and legitimate decision-making processes, especially in the context of Universal Health Coverage where demands outweigh the available resources and difficult decisions need to be made. Deliberative approaches are often viewed as especially useful in considering social values and balancing trade-offs, however, implementation of deliberative engagement tools for priority-setting is scant, especially in low- and middle-income settings. In order to address this gap, we implemented a context-specific public deliberation tool in a rural community in South Africa to determine priorities for a health services package. Qualitative data were analysed from seven group deliberations using the engagement tool. The analysis focused on understanding the deliberative process, what the participants prioritized, the reasons for these selections and how negotiations took place within the groups. The deliberations demonstrated that the groups often considered curative services to be more important than primary prevention which related to the perceived lack of efficacy of existing health education and prevention programmes in leading to behaviour change. The groups engaged deeply with trade-offs between costly treatment options for HIV/AIDS and those for non-communicable disease. Barriers to healthcare access were considered especially important by all groups and some priorities included investing in more mobile clinics. This study demonstrates that deliberative engagement methods can be successful in helping communities balance trade-offs and in eliciting social values around health priorities. The findings from such deliberations, alongside other evidence and broader ethical considerations, have the potential to inform decision-making with regard to health policy design and implementation.

Economic analysis in behavioral health: Toward application of standardized methodologies.

Health care remains the most expensive sector in the U.S. economy, now accounting for nearly 1 in every 5 dollars spent. The purpose of health care is to improve the health of populations. However, formal medical care is one of many alternatives for improving health. In order to make better use of scarce resources, cost-effectiveness methodologies have been developed to evaluate how to produce the most health within the constraints of available resources. Standardized cost-effectiveness methodologies are now commonly used in the evaluation of medical therapies and new technologies. However, these methods have rarely been employed for the evaluation of behavioral interventions. Behavioral interventions often use measures that are not generally applied in other areas of health outcomes research. A consequence of neglecting to employ standardized cost-effectiveness analysis is that behavioral, psychological, and environmental interventions may be left out of resource allocation discussions. The purpose of this paper is to review standardized approaches to cost-effectiveness analysis and to encourage their use for the evaluation of behavioral intervention programs. Application of standardized methods of cost-effectiveness analysis will allow direct comparisons between investing in behavioral interventions programs in comparison to a wide range of other alternatives. The methods are general and can be used to estimate the cost-effectiveness of social and environmental interventions in addition to traditional medical and surgical treatments. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Past, present and future challenges in health care priority setting.

Purpose Current conditions have intensified the need for health systems to engage in the difficult task of priority setting. As the search for a "magic bullet" is replaced by an appreciation for the interplay between evidence, interests, culture, and outcomes, progress in relation to these dimensions requires assessment of achievements to date and identification of areas where knowledge and practice require attention most urgently. The paper aims to discuss these issues. Design/methodology/approach An international survey was administered to experts in the area of priority setting. The survey consisted of open-ended questions focusing on notable achievements, policy and practice challenges, and areas for future research in the discipline of priority setting. It was administered online between February and March of 2015. Findings "Decision-making frameworks" and "Engagement" were the two most frequently mentioned notable achievements. "Priority setting in practice" and "Awareness and education" were the two most frequently mentioned policy and practical challenges. "Priority setting in practice" and "Engagement" were the two most frequently mentioned areas in need of future research. Research limitations/implications Sampling bias toward more developed countries. Future study could use findings to create a more concise version to distribute more broadly. Practical implications Globally, these findings could be used as a platform for discussion and decision making related to policy, practice, and research in this area. Originality/value Whilst this study reaffirmed the continued importance of many longstanding themes in the priority setting literature, it is possible to also discern clear shifts in emphasis as the discipline progresses in response to new challenges.

Community Priorities for Hospital-Based Prevention Initiatives: Results From a Deliberating Public.

CONTEXT: Internal revenue service provisions require not-for-profit hospitals to provide "community benefit." In addition, the Affordable Care Act requires these hospitals to conduct community health needs assessments that involve appropriate stakeholders. These requirements signal government interest in creating opportunities for developing programs that are well tailored and responsive to the needs of the communities served. Gaining meaningful input from residents is a critical aspect of these processes. OBJECTIVE: To implement public deliberations that explore local resident priorities for use of a hospital's community benefit resources to prevent chronic disease. METHODS: Public deliberation is a method of community engagement that can provide guidance to decision makers on value-laden issues when technical solutions alone are inadequate to provide direction or set priorities. Three deliberations featuring presentations by experts and discussions among participants were convened with a cross section of residents in Brooklyn, New York. Participants were asked whether new hospital initiatives should prioritize: clinical prevention, community-based interventions, or action on broader policies affecting population health. Pre- and postsurveys, as well as qualitative methods, were used to assess knowledge and attitudes. RESULTS: Postdeliberation, participants had significant changes in knowledge, particularly on the impact of education on health. Participants prioritized community-based and policy interventions over expanding clinical prevention capacity. CONCLUSIONS: Public deliberation offers a method to probe informed constituent views of how a hospital can best promote its community's health. Informed local residents felt that hospitals should frame health-promoting activities more broadly than is current practice. Not-for-profit hospitals gain significant tax advantages. Increased insurance rates suggest that some hospitals will experience savings in uncompensated care that can be used to promote health more broadly. Vetting priorities for the use of new resources with informed community members can be accomplished through public deliberation. These results suggest community support for nonclinical approaches to disease prevention.

Public Mistrust of the U.S. Health Care System's Profit Motives: Mixed-Methods Results from a Randomized Controlled Trial.

BACKGROUND: Decision makers are increasingly tasked with reducing health care costs, but the public may be mistrustful of these efforts. Public deliberation helps gather input on these types of issues by convening a group of diverse individuals to learn about and discuss values-based dilemmas. OBJECTIVE: To explore public perceptions of health care costs and how they intersect with medical mistrust. DESIGN AND PARTICIPANTS: This mixed-methods study analyzed data from a randomized controlled trial including four public deliberation groups (n = 96) and a control group (n = 348) comprising English-speaking adults aged 18 years and older. Data were collected in 2012 in four U.S. regions. APPROACH: We used data from four survey items to compare attitude shifts about costs among participants in deliberation groups to participants in the control group. We qualitatively analyzed deliberation transcripts to identify themes related to attitude shifts and to provide context for quantitative results about attitude shifts. KEY RESULTS: Deliberation participants were significantly more likely than control group participants to agree that doctors and patients should consider cost when making treatment decisions (ß = 0.59; p < 0.01) and that people should consider the effect on group premiums when making treatment decisions (ß = 0.48; p < 0.01). Qualitatively, participants mistrusted the health care system's profit motives (e.g., that systems prioritize making money over patient needs); however, after grappling with patient/doctor autonomy and learning about and examining their own views related to costs during the process of deliberation, they largely concluded that payers have the right to set some boundaries to curb costs. CONCLUSIONS: Individuals who are informed about costs may be receptive to boundaries that reduce societal health care costs, despite their mistrust of the health care system's profit motives, especially if decision makers communicate their rationale in a transparent manner. Future work should aim to develop transparent policies and practices that earn public trust.

Global Developments in Priority Setting in Health.

Countries around the world are experiencing an ever-increasing need to make choices in investments in health and healthcare. This makes it incumbent upon them to have formal processes in place to optimize the legitimacy of eventual decisions. There is now growing experience among countries of the implementation of stakeholder participation, and a developing convergence of methods to support decision-makers within health authorities in making tough decisions when faced with the stark reality of limited resources. We call for further interaction among health authorities, and the research community to develop best practices in order to confront the difficult choices that need to be made.

Setting Boundaries: Public Views on Limiting Patient and Physician Autonomy in Health Care Decisions.

We obtained and qualitatively analyzed input from more than nine hundred citizens during seventy-six public deliberation sessions about patient and physician autonomy in decision making, setting health care boundaries, and the tensions among competing social values. Generally, participants resisted interference with the patient-physician relationship and believed strongly in the freedom of patient and physician to control individual medical decisions. However, during deliberation participants identified two situations where boundaries and regulations in health care were more acceptable: protecting people from harm and allocating limited resources. The core value of individual freedom was tempered in varying degrees by the values of concern for the greater good and fairness in allocating resources. Where tensions between values emerged, participants used different concepts-including accountability, transparency, trust, personal responsibility, and moral obligation-to navigate trade-offs. Fairly balancing the public's desire to protect individual freedom with their sense of responsibility for protecting the common good may be the key to developing acceptable, workable policies that promote evidence-based medical practice.

Lack of Cost-Effectiveness Analyses to Address Healthy People 2020 Priority Areas.

OBJECTIVES: To examine the extent to which recently published cost-utility analyses (cost-effectiveness analyses using quality-adjusted life-years to measure health benefits) have covered the leading health concerns in the US Department of Health and Human Services Healthy People 2020 report. METHODS: We examined data in the Tufts Medical Center Cost-Effectiveness Analysis Registry, a database containing 5000 published cost-utility analyses published in the MEDLINE literature through 2014. We focused on US-based cost-utility analyses published from 2011 through 2014 (n = 687). Two reviewers scanned abstracts and met for a consensus on categorization of cost-utility analyses that addressed the specific priorities listed in the 12 Healthy People 2020 areas (n = 120). RESULTS: Although 7.3% of recently published cost-utility analyses addressed key clinical preventive services, only about 2% of recently published cost-utility analyses covered each of the following Healthy People 2020 topics: reproductive and sexual health, nutrition/physical activity/obesity, maternal and infant health, and tobacco. Fewer than 1% addressed priorities such as injuries and violence, mental health or substance abuse, environmental quality, and oral health. CONCLUSIONS: Few cost-utility analyses have addressed Healthy People 2020 priority areas.

Understanding An Informed Public's Views On The Role Of Evidence In Making Health Care Decisions.

Policy makers and practitioners increasingly believe that medical evidence plays a critical role in improving care and health outcomes and lowering costs. However, public understanding of the role of evidence-based care may be different. Public deliberation is a process that convenes diverse citizens and has them learn about and consider ethical or values-based dilemmas and weigh alternative views. The Community Forum Deliberative Methods Demonstration project, sponsored by the Agency for Healthcare Research and Quality, obtained informed public views on the role of evidence in health care decisions through seventy-six deliberative groups involving 907 people overall, in the period August-November 2012. Although participants perceived evidence as being essential to high-quality care, they also believed that personal choice or clinical judgment could trump evidence. They viewed doctors as central figures in discussing evidence with patients and key arbiters of whether to follow evidence in individual cases. They found evidence of harm to individuals or the community to be more compelling than evidence of effectiveness. These findings indicate that increased public understanding of evidence can play an important role in advancing evidence-based care by helping create policies that better reflect the needs and values of the public.

Effectiveness of public deliberation methods for gathering input on issues in healthcare: Results from a randomized trial.

UNLABELLED: Public deliberation elicits informed perspectives on complex issues that are values-laden and lack technical solutions. This Deliberative Methods Demonstration examined the effectiveness of public deliberation for obtaining informed public input regarding the role of medical evidence in U.S. healthcare. We conducted a 5-arm randomized controlled trial, assigning participants to one of four deliberative methods or to a reading materials only (RMO) control group. The four deliberative methods reflected important differences in implementation, including length of the deliberative process and mode of interaction. The project convened 76 groups between August and November 2012 in four U.S. LOCATIONS: Chicago, IL; Sacramento, CA; Silver Spring, MD; and Durham, NC, capturing a sociodemographically diverse sample with specific attention to ensuring inclusion of Hispanic, African-American, and elderly participants. Of 1774 people recruited, 75% participated: 961 took part in a deliberative method and 377 participants comprised the RMO control group. To assess effectiveness of the deliberative methods overall and of individual methods, we evaluated whether mean pre-post changes on a knowledge and attitude survey were statistically different from the RMO control using ANCOVA. In addition, we calculated mean scores capturing participant views of the impact and value of deliberation. Participating in deliberation increased participants' knowledge of evidence and comparative effectiveness research and shifted participants' attitudes regarding the role of evidence in decision-making. When comparing each deliberative method to the RMO control group, all four deliberative methods resulted in statistically significant change on at least one knowledge or attitude measure. These findings were underscored by self-reports that the experience affected participants' opinions. Public deliberation offers unique potential for those seeking informed input on complex, values-laden topics affecting broad public constituencies.

Deliberation: obtaining informed input from a diverse public.

OBJECTIVES: Health care decision makers require public input to incorporate diverse values into programs and policies. Deliberation, one method for obtaining input, seeks to apply inclusive principles wherein diverse groups provide perspectives to inform decisions. We evaluate whether participants of different racial, ethnic, and educational backgrounds show differences in the effect of deliberation and the value placed on deliberation participation. METHODS: We surveyed 907 participants before and after deliberation. Regression models examined associations between demographics and change in knowledge and attitudes, and perceived impact. RESULTS: Changes in knowledge about using medical evidence in decision-making were not associated with race, ethnicity, or education. Changes in attitudes were not associated with these characteristics with one exception. African American, Hispanic, and participants with lower educational attainment reported more perceived impact. CONCLUSION: Similar results across demographic groups suggest deliberation's promise for obtaining input from a diverse public to inform health programs and policies.

Response to a patient activation intervention among Spanish-speaking patients at a community health center in New York City.

Patient activation describes an individual's readiness to participate in their health care. Lower levels of activation that may contribute to poor health outcomes have been documented in Latino patients. We administered a brief activating intervention directed at Spanish-speakers that sought to improve and encourage question-asking during a medical visit. We used quantitative measures of patient attitudes supplemented with open-ended questions to evaluate the effectiveness of the intervention at a community health center. Post-intervention changes in the Patient Activation Measure (PAM) and Decision Self-Efficacy (DSE) were measured. Both control and intervention group PAM scores changed significantly, but for those at lower levels of activation, only the intervention group showed significant gains. For the DSE the intervention group showed significant changes in scores. These findings, which are supported by the qualitative data, suggest that the intervention helped patients who may have difficulty asking questions during medical visits.