Evaluating community deliberations about health research priorities

Dados Bibliográficos

ID19507347
AutoresSusan Dorr Goold (0000-0002-0258-9774, Department of Internal Medicine, Division of General Medicine, Institute for Healthcare Policy and Innovation Center for Bioethics and Social Sciences in Medicine Ann Arbor Michigan, autor correspondente), Marion Danis (0000-0002-4749-4568, Warren Magnuson Clinical Center National Institutes of Health Bethesda Maryland), Julia Abelson (0000-0002-2907-2783, Department of Clinical Epidemiology and Biostatistics McMaster University Hamilton Ontario Canada), Michele C Gornick (0000-0002-3451-8858, Center for Bioethics and Social Sciences in Medicine University of Michigan Ann Arbor Michigan), Michelle Gornick (University of Michigan), Lisa Szymecko (Center for Bioethics and Social Sciences in Medicine University of Michigan Ann Arbor Michigan), C Daniel Myers (0000-0001-9695-1414, Department of Political Science University of Minnesota Minneapolis Minnesota), Zachary Rowe (Friends of Parkside Detroit Michigan), Hyungjin Myra Kim (0000-0002-0604-8027, Center for Statistical Computation and Research University of Michigan Ann Arbor Michigan), Cengiz Salman (Center for Bioethics and Social Sciences in Medicine University of Michigan Ann Arbor Michigan)
Ano2019
Volume22
Fascículo4
Páginas772-784
Data de publicação2019-08-01
Peer ReviewedSim
Open AccessSim
TipoARTICLE
PeriódicoHealth Expectations (JOURNAL)
Identificadores do periódicoISSN: 1369-6513 • E-ISSN: 1369-7625
EditoraWiley (PUBLISHER • GB)
DOI10.1111/hex.12931
PMID31251446
OpenAlexW2953861153
IdiomaEN
Citações recebidas8
Referências citadas37

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

Democracy · Health care · Health equity · Medical education · Political science · Politics · Public relations · Biomedical Ethics and Regulation · Ethics in Clinical Research · Health Systems, Economic Evaluations, Quality of Life · Medicine · Psychology