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1.
J Health Polit Policy Law ; 45(3): 373-418, 2020 06 01.
Article in English | MEDLINE | ID: mdl-32084263

ABSTRACT

CONTEXT: Medicaid plays a critical role in low-income, minority, and medically underserved communities, particularly in states that have expanded Medicaid under the Affordable Care Act. Yet, the voices of underresourced communities are often unheard in decisions about how to allocate Medicaid's scarce resources, and traditional methods of public engagement are poorly suited to gathering such input. We argue that deliberative public engagement can be a useful tool for involving communities in setting Medicaid priorities. METHOD: We engaged 209 residents of low-income, medically underserved Michigan communities in discussions about Medicaid spending priorities using an exercise in informed deliberation: CHAT (CHoosing All Together). Participants learned about Medicaid, deliberated in small groups, and set priorities both individually and collectively. FINDINGS: Participants prioritized broad eligibility consistent with the ACA expansion, accepted some cost sharing, and prioritized spending in areas-including mental health-that are historically underfunded. Participants allocated less funding beyond benefit coverage, such as spending on healthy communities. Participants perceived the deliberative process as fair and informative, and they supported using it in the policy-making process. CONCLUSION: The choices of participants from low-income, medically underserved communities reflect a unique set of priorities and suggest that engaging low-income communities more deeply in Medicaid policy making might result in different prioritization decisions.


Subject(s)
Medicaid , Patient Protection and Affordable Care Act , Eligibility Determination , Humans , Policy Making , Poverty , United States
2.
Health Expect ; 22(4): 772-784, 2019 08.
Article in English | MEDLINE | ID: mdl-31251446

ABSTRACT

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.


Subject(s)
Community Participation/methods , Health Status Disparities , Medically Underserved Area , Minority Groups/psychology , Research/organization & administration , Adolescent , Adult , Aged , Aged, 80 and over , Female , Group Processes , Healthcare Disparities/organization & administration , Humans , Interviews as Topic , Male , Michigan , Middle Aged , Young Adult
3.
Milbank Q ; 96(4): 675-705, 2018 12.
Article in English | MEDLINE | ID: mdl-30537366

ABSTRACT

Policy Points Engaging 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.


Subject(s)
Biomedical Research/methods , Health Policy , Health Priorities , Minority Groups , Patient Selection , Vulnerable Populations , Adolescent , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Research Design , United States , Young Adult
4.
Polit Behav ; 42(2): 557-580, 2020 Jun.
Article in English | MEDLINE | ID: mdl-32367900

ABSTRACT

Proponents of public deliberation suggest that engaging in deliberation increases deliberators' subsequent participation in other forms of politics. We evaluate this "deliberative participation hypothesis" using data drawn from a deliberative field experiment in which members of medically underserved communities in Michigan deliberated in small groups about the design of that state's Medicaid program. Participants were randomly assigned to deliberate about the program in a group or to think about the decision individually, and then completed a post-survey that included measures of willingness to engage in a variety of political acts. We measured willingness to engage in common forms of political participation, as well as willingness to participate in particularistic resistance to adverse decisions by insurance bureaucracies. Contrary to the claims of much of the existing literature, we find no impact of deliberation on willingness to engage in political participation. These results suggest that the ability of public deliberation to increase broader political engagement may be limited or may only occur in particularly intensive, directly empowered forms of public deliberation.

5.
Health Serv Res ; 52(2): 599-615, 2017 04.
Article in English | MEDLINE | ID: mdl-27206519

ABSTRACT

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.


Subject(s)
Health Services Research , Minority Groups , Patient-Centered Care , Vulnerable Populations , Adolescent , Adult , Aged , Aged, 80 and over , Attitude to Health , Female , Focus Groups , Health Services Accessibility , Health Services Needs and Demand , Health Services Research/organization & administration , Health Services Research/standards , Humans , Interviews as Topic , Male , Middle Aged , Outcome Assessment, Health Care/organization & administration , Outcome Assessment, Health Care/standards , Patient-Centered Care/organization & administration , Patient-Centered Care/standards , Physician-Patient Relations , Quality of Life , Research , Young Adult
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