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

Susan D. Goold, C. D Myers, Lisa Szymecko, Carla Collins, Sal Martinez, Charo Ledon, Terrance Campbell, Marion Danis, Stephanie Cargill, H. Myra Kim, Zachary Rowe

Research output: Contribution to journalArticle

6 Scopus citations

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.
Original languageEnglish (US)
JournalHealth Services Research
Early online dateMay 20 2016
StatePublished - Mar 12 2017

Keywords

  • Patient centered outcomes research
  • Resource allocation
  • Minority groups
  • Decision Making
  • Research priorities

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    Goold, S. D., Myers, C. D., Szymecko, L., Collins, C., Martinez, S., Ledon, C., Campbell, T., Danis, M., Cargill, S., Kim, H. M., & Rowe, Z. (2017). Priorities for Patient-Centered Outcomes Research: The Views of Minority and Underserved Communities. Health Services Research.