772
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Health Expectations. 2019;22:772–784.
wileyonlinelibrary.com/journal/hex
Received: 31 December 2018
|
Revised: 5 April 2019
|
Accepted: 21 May 2019
DOI: 10.1111/hex.12931
ORIGINAL RESEARCH PAPER
Evaluating community deliberations about health research
priorities
Susan Dorr Goold MD, MHSA, MA, Professor
1
| Marion Danis MD, Section Head
2
|
Julia Abelson PhD, Professor
3
| Michelle Gornick PhD, Research Investigator
4
|
Lisa Szymecko JD, PhD, Researcher
4
| C. Daniel Myers PhD, Assistant Professor
5
|
Zachary Rowe Executive Director
6
| Hyungjin Myra Kim ScD, Research Scientist
7
|
Cengiz Salman MA, Doctoral Candidate
4
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium,
provided the original work is properly cited.
© 2019 The Authors Health Expectations published by John Wiley & Sons Ltd
1
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
2
Warren Magnuson Clinical Center, National
Institutes of Health, Bethesda, Maryland
3
Department of Clinical Epidemiology
and Biostatistics, McMaster University,
Hamilton, Ontario, Canada
4
Center for Bioethics and Social Sciences
in Medicine, University of Michigan, Ann
Arbor, Michigan
5
Department of Political Science, University
of Minnesota, Minneapolis, Minnesota
6
Friends of Parkside, Detroit, Michigan
7
Center for Statistical Computation and
Research, University of Michigan, Ann
Arbor, Michigan
Correspondence
Susan Dorr Goold, Department of Internal
Medicine, Division of General Medicine,
Institute for Healthcare Policy and
Innovation, Center for Bioethics and Social
Sciences in Medicine, 2800 Plymouth Road,
Bldg 16 425‐W, Ann Arbor, MI 48109.
Email: sgoold@umich.edu
Present Address
Cengiz Salman, Department of American
Culture, College of Literature, Science and
the Arts, University of Michigan, Ann Arbor,
Michigan
Funding information
This work was supported by a grant from
the National Institute on Aging (Grant
#1RO1AG040138‐01).
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.