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Health Serv Res. 2017 Apr;52(2):599-615. doi: 10.1111/1475-6773.12505. Epub 2016 May 20.

Priorities for Patient-Centered Outcomes Research: The Views of Minority and Underserved Communities.

Author information

1
Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, MI.
2
Department of Political Science, University of Minnesota, Minneapolis, MN.
3
Mark Twain Regional Health Alliance, Van Buren, MO.
4
Community Renewal and Development, Inc., St. Louis, MO.
5
Acción Buenos Vecinos, Ann Arbor, MI.
6
Wayne State University College of Education VAC Program, YOUR Center, Flint, MI.
7
Department of Bioethics, National Institutes of Health, Bethesda, MD.
8
Department of Health Care Ethics, Albert Gnaegi Center for Health Care Ethics, Saint Louis University, St. Louis, MO.
9
Center for Statistical Consultation and Research, University of Michigan, Ann Arbor, MI.
10
Friends of Parkside, Detroit, MI.

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.

KEYWORDS:

Patient-centered outcomes research; decision making; minority groups; research priorities; resource allocation

PMID:
27206519
PMCID:
PMC5346487
DOI:
10.1111/1475-6773.12505
[Indexed for MEDLINE]
Free PMC Article

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