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Context: Engaging underrepresented communities in health research priority setting could make the scientific agenda more equitable and more responsive to their needs. Objective: Evaluate democratic deliberations engaging minority and underserved communities in setting health research priorities. Methods: Participants from underrepresented communities throughout Michigan (47 groups, n = 519) engaged in structured deliberations about health research priorities in professionally facilitated groups. We evaluated some aspects of the structure, process, and outcomes of deliberations, including representation, equality of participation, participants' views of deliberations, and the impact of group deliberations on individual participants' knowledge, attitudes, and points of view. Follow‐up interviews elicited richer descriptions of these and also explored later effects on deliberators. Results: Deliberators (age 18‐88 years) overrepresented minority groups. Participation in discussions was well distributed. Deliberators improved their knowledge about disparities, but not about health research. Participants, on average, supported using their group's decision to inform decision makers and would trust a process like this to inform funding decisions. Views of deliberations were the strongest predictor of these outcomes. Follow‐up interviews revealed deliberators were particularly struck by their experience hearing and understanding other points of view, sometimes surprised at the group's ability to reach agreement, and occasionally activated to volunteer or advocate. Conclusions: Deliberations using a structured group exercise to engage minority and underserved community members in setting health research priorities met some important criteria for a fair, credible process that could inform policy. Deliberations appeared to change some opinions, improved some knowledge, and were judged by participants worth using to inform policymakers. [ABSTRACT FROM AUTHOR]

Context: Approaches to priority‐setting for scarce resources have shifted to public deliberation as trade‐offs become more difficult. We report results of a qualitative analysis of public deliberation in Switzerland, a country with high health‐care costs, an individual health insurance mandate and a strong tradition of direct democracy with frequent votes related to health care. Methods: We adapted the Choosing Healthplans All Together (CHAT) tool, an exercise developed to transform complex health‐care allocation decisions into easily understandable choices, for use in Switzerland. We conducted focus groups in twelve Swiss cities, recruiting from a range of socio‐economic backgrounds in the three language regions. Findings: Participants developed strategic arguments based on the importance of basic coverage for all, and of cost‐benefit evaluation. They also expressed arguments relying on a principle of solidarity, in particular the importance of protection for vulnerable groups, and on the importance of medical care. They struggled with the place of personal responsibility in coverage decisions. In commenting on the exercise, participants found the degree of consensus despite differing opinions surprising and valuable. Conclusion: The Swiss population is particularly attentive to the costs of health care and means of reducing these costs. Swiss citizens are capable of making trade‐offs and setting priorities for complex health issues. [ABSTRACT FROM AUTHOR]

This brief essay describes the purpose, the content, and the development, by a group of Hastings Center fellows and a scholar at the Center, of the Hastings Center Bioethics Timeline. The timeline covers the wide range of contemporary events pertaining to the intersection of bioethics with the medical and biological sciences, health care, and health policy, as well as the medical arts and medical humanities. A collaborative effort that documents events in a collaborative field, the timeline is meant to be updated and edited so that it improves over time. [ABSTRACT FROM AUTHOR]

Objectives In order to teach medical students to engage more fully with patients, we offer ethics education as a tool to assist in the management of patient health issues. Methods We propose that many dilemmas in clinical medicine would benefit by having the doctor embark on an iterative reasoning process with the patient. Such a process acknowledges and engages the patient as a moral agent. We recommend employing Kant’s ethic of respect and a more inclusive definition of patient autonomy drawn from philosophy and clinical medicine, rather than simply presenting dichotomous choices to patients, which represents a common, but often suboptimal, means of approaching both medical and moral concerns. Discussion We describe how more nuanced teaching about the ethics of the doctor–patient relationship might fit into the medical curriculum and offer practical suggestions for implementing a more respectful, morally engaged relationship with patients that should assist them to achieve meaningful health goals. [ABSTRACT FROM AUTHOR]

Objective To demonstrate that employees can gain understanding of the financial constraints involved in designing health insurance benefits. Background While employees who receive their health insurance through the workplace have much at stake as the cost of health insurance rises, they are not necessarily prepared to constructively participate in prioritizing their health insurance benefits in order to limit cost. Design Structured group exercises. Setting and participants Employees of 41 public and private organizations in Northern California. Intervention Administration of the CHAT (Choosing Healthplans All Together) exercise in which participants engage in deliberation to design health insurance benefits under financial constraints. Main outcome measures Change in priorities and attitudes about the need to exercise insurance cost constraints. Results Participants ( N = 744) became significantly more cognizant of the need to limit insurance benefits for the sake of affordability and capable of prioritizing benefit options. Those agreeing that it is reasonable to limit health insurance coverage given the cost increased from 47% to 72%. Conclusion It is both possible and valuable to involve employees in priority setting regarding health insurance benefits through the use of structured decision tools. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Focuses on advance directives and comments on studies which indicate that patients' wishes about life-sustaining treatments are not entirely stable over time. A study which reported that dialysis patients who had either written or verbal advance directives were much more likely than patients without directives to be reconciled to their death.

Policy PointsEngaging and involving underrepresented communities when setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values.Groups and individuals from minority and underserved communities strongly prioritized child health and mental health research, often choosing to invest at the highest possible level.Groups consisting of predominantly Native American or Arab American participants invested in culture and beliefs research at the highest level, while many groups did not select it at all. The priority given to culture and beliefs research by these groups illustrates the importance of paying special attention to unique preferences, and not just commonly held views, when getting public input on spending priorities for research. Context: A major contributor to health disparities is the relative lack of resources—including resources for science—allocated to address the health problems of those with disproportionately greater needs. Engaging and involving underrepresented communities in setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values. We engaged minority and underserved communities in informed deliberations and report here their priorities for health research. Methods: Academic‐community partnerships adapted the simulation exercise CHAT for setting health research priorities. We had participants from minority and medically underserved communities (47 groups, n = 519) throughout Michigan deliberate about health research priorities, and we used surveys and CHAT software to collect the demographic characteristics and priorities selected by individuals and groups. Findings: The participants ranged in age (18 to 88), included more women than men, and were overrepresented by minority groups. Nearly all the deliberating groups selected child health and mental health research (93.6% and 95.7%), and most invested at the highest level. Aging, access, promote health, healthy environment, and what causes disease were also prioritized by groups. Research on mental health and child health were high priorities for individuals both before and after group deliberations. Access was the only category more likely to be selected by individuals after group deliberation (77.0 vs 84.0%, OR = 1.63, p =.005), while improve research, health policy, and culture and beliefs were less likely to be selected after group deliberations (all, p <.001). However, the level of investment in many categories changed after the group deliberations. Participants identifying as Black/African American were less likely to prioritize mental health research, and those of Other race were more likely to prioritize culture and beliefs research. Conclusions: Minority and medically underserved communities overwhelmingly prioritized mental health and child health research in informed deliberations about spending priorities. [ABSTRACT FROM AUTHOR]

Home care is one of the fastest‐growing industries in the United States, providing valuable opportunities for millions of older adults and people with disabilities to live at home rather than in institutional settings. Home care workers assist clients with essential activities of daily living, but their wages and working conditions generally fail to reflect the importance of their work. Drawing on the work of Eva Feder Kittay and other care ethicists, we argue that good care involves attending to the needs of another out of a concern for their well‐being. Such care should be standard in the home care system. Yet, because of the pervasive racial, gender, and economic inequalities that the home care industry perpetuates, home care workers and their clients cannot reasonably be expected to care about each other. We endorse reforms aimed at enabling home care workers and their clients to form and maintain professional relationships that cultivate care.. [ABSTRACT FROM AUTHOR]

Occasionally, the ability of prospective research participants to consent may be uncertain. Yet standardized capacity‐assessment tools may not suffice to determine the ability to consent to a particular research protocol. This study consisted of a retrospective review of the outcomes of an alternative approach used by the Ability to Consent Assessment Team at the National Institutes of Health. Of 944 individuals evaluated over 20 years (1999‐2019), 70.1% were determined to have capacity to consent to participate in research. Of those who lacked capacity to consent and were subsequently evaluated for their ability to assign a surrogate, 86.0% had the ability to do so. The findings demonstrate that establishing a task‐specific approach for assessing the capacity of potential participants to consent to a variety of research protocols can facilitate safe and ethically justifiable inclusion of individuals whose ability to consent is initially uncertain. [ABSTRACT FROM AUTHOR]

This article provides pragmatic advice for organizations interested in creating a research ethics consultation service (RECS). A robust RECS has the potential to build capacity among investigators to identify and consider the ethical issues they encounter while conducting their research. Determining whether to establish an RECS should begin with an institutional‐needs assessment that includes three key questions: What are the current resources available to research teams to navigate ethical concerns that arise from their research? Is there a demand or perceived need for more resources? Is there institutional support (financial and otherwise) to establish and maintain an RECS? If this results in the decision to establish the consultation service, relevant institutional stakeholders must be identified and consulted, and personnel with the requisite skills recruited. The next step is to establish an RECS and build the infrastructure to process and respond to requests. The RECS's long‐term sustainability will depend on a stable source of funding and a mechanism to receive constructive feedback to ensure that the service is meeting the institutional needs it set out to address. [ABSTRACT FROM AUTHOR]

Objective: To learn how minority and underserved communities would set priorities for patient-centered outcomes research (PCOR).Data Sources: Sixteen groups (n = 183) from minority and underserved communities in two states deliberated about PCOR priorities using the simulation exercise CHoosing All Together (CHAT). Most participants were minority, one-third reported income <$10,000, and one-fourth reported fair/poor health.Design: Academic-community partnerships adapted CHAT for PCOR priority setting using existing research agendas and interviews with community leaders, clinicians, and key informants.Data Collection: Tablet-based CHAT collected demographic information, individual priorities before and after group deliberation, and groups' priorities.Principal Findings: Individuals and groups prioritized research on Quality of Life, Patient-Doctor, Access, Special Needs, and (by total resources spent) Compare Approaches. Those with less than a high school education were less likely to prioritize New Approaches, Patient-Doctor, Quality of Life, and Families/Caregivers. Blacks were less likely to prioritize research on Causes of Disease, New Approaches, and Compare Approaches than whites. Compare Approaches, Special Needs, Access, and Families/Caregivers were significantly more likely to be selected by individuals after compared to before deliberation.Conclusions: Members of underserved communities, in informed deliberations, prioritized research on Quality of Life, Patient-Doctor, Special Needs, Access, and Compare Approaches. [ABSTRACT FROM AUTHOR]

Clinical research ethics consultation services have been established across academic health centers over the past decade. This paper presents the results of collaboration within the CTSA consortium to develop a standard approach to the collection of research ethics consultation information to serve as a foundation for quality improvement, education, and research efforts. This approach includes categorizing and documenting descriptive information about the requestor, research project, the ethical question, the consult process, and describing the basic structure for a consult note. This paper also explores challenges in determining how to share some of this information between collaborating institutions related to concerns about confidentially, data quality, and informatics. While there is much still to be learned to improve the process of clinical research ethics consultation, these tools can advance these efforts, which, in turn, can facilitate the ethical conduct of research. [ABSTRACT FROM AUTHOR]

Clinical ethics consultation is largely outside the scope of regulation and oversight, despite its importance. For decades, the bioethics community has been unable to reach a consensus on whether there should be accountability in this work, as there is for other clinical activities that influence the care of patients. The American Society for Bioethics and Humanities, the primary society of bioethicists and scholars in the medical humanities and the organizational home for individuals who perform CEC in the United States, has initiated a two-step quality attestation process as a means to assess clinical ethics consultants and help identify individuals who are qualified to perform this role. This article describes the process. [ABSTRACT FROM AUTHOR]