Priorities for Patient‐Centered Outcomes Research: The Views of Minority and Underserved Communities
Published online on May 20, 2016
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.