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

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.

Figure 1

PCOR‐CHAT Game Board from November 1, 2013, to March 30, 2014