337 Harnessing the power of the participant perspective: CCTST’s Research Participant Advisory Group

Abstract

Objectives/Goals: The Research Participant Advisory Group (RPAG) was born out of the concept that, by creating a structured way for researchers to collaborate with research participants and/or community, we can improve, grow, and support clinical/research-based research, from design to dissemination. Three distinct groups exist across our Academic Health Center (AHC). Methods/Study Population: The RPAG has 3 groups: The Cincinnati Children’s Hospital Research Participant Advisory Council (CCHMC RPAC) addresses clinical research needs, such as research design, recruitment, and consenting. Adult/youth research participants and family members (n = 21) provide feedback about how to improve a research process, form or other research tool. In Cincinnati’s underserved West End, the West End Community Research Advisory Board (WE C-RAB: n = 18) focuses on the needs of underserved minority groups and supports researchers wishing to do community-based research. The newly formed University of Cincinnati RPAC (UC RPAC; n = 17) addresses the UC research needs. All groups meet monthly and are offered a meal and incentive. All members have received training in the responsible conduct of research. Results/Anticipated Results: Over 70 researchers have brought research challenges to the RPAG groups over the last 8 years, leading to improved consent forms, more targeted recruitment, clearer language and a more streamlined screening process. RPAG member surveys indicate a greater understanding of clinical research challenges, critical health issues, and how research can benefit them. The WE C-RAB has improved community recruitment efforts, as well as survey and study design. Researchers highlight the importance of feedback in creating greater study participant engagement, indicating deeper understanding of the community/participant perspective and how to work “with” community. Ongoing WE C-RAB-faculty partnerships have led to at least 3 federally funded grants. Discussion/Significance of Impact: The 3 RPAGs provide the versatility to meet the needs of the diverse research spectrum across the AHC. This includes the type of research as well as the level or degree of participant/community engagement needed. RPAGs create greater connection and understanding leading to better participant experiences and the promise of better health outcomes.