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

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.

Authors

Institutions

Publication Details

Journal
Journal of Clinical and Translational Science
Published
2025-03-25
DOI
https://doi.org/10.1017/cts.2024.966
Primary Topic
Mental Health and Patient Involvement
Type
article
Field-Weighted Citation Impact
0.00

Funders

Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

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

Maureen Trebilcock, Becca Harper, Julie Wijesooriya, Melinda Butsch et al.
Journal of Clinical and Translational Science
Mental Health and Patient Involvement
article

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

Maureen Trebilcock, Becca Harper, Julie Wijesooriya, Melinda Butsch, Kovacic
article en

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.

Journal of Clinical and Translational ScienceVol. 9(s1)
Cincinnati Children's Hospital Medical Center (US), University of Cincinnati (US)
Yale University
Openalex Percentile: Top 91%
Mental Health and Patient Involvement
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.