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Equitable community-based participatory research engagement with communities of color drives All of Us Wisconsin genomic research priorities. J Am Med Inform Assoc 2024 Dec 01;31(12):2940-2951

Date

10/23/2024

Pubmed ID

39441983

Pubmed Central ID

PMC11631115

DOI

10.1093/jamia/ocae265

Scopus ID

2-s2.0-85212456796 (requires institutional sign-in at Scopus site)

Abstract

OBJECTIVE: The NIH All of Us Research Program aims to advance personalized medicine by not only linking patient records, surveys, and genomic data but also engaging with participants, particularly from groups traditionally underrepresented in biomedical research (UBR). This study details how the dialogue between scientists and community members, including many from communities of color, shaped local research priorities.

MATERIALS AND METHODS: We recruited area quantitative, basic, and clinical scientists as well as community members from our Community and Participant Advisory Boards with a predetermined interest in All of Us research as members of a Special Interest Group (SIG). An expert community engagement scientist facilitated 6 SIG meetings over the year, explicitly fostering openness and flexibility during conversations. We qualitatively analyzed discussions using a social movement framework tailored for community-based participatory research (CBPR) mobilization.

RESULTS: The SIG evolved through CBPR stages of emergence, coalescence, momentum, and maintenance/integration. Researchers prioritized community needs above personal academic interests while community members kept discussions focused on tangible return of value to communities. One key outcome includes SIG-driven shifts in programmatic and research priorities of the All of Us Research Program in Southeastern Wisconsin. One major challenge was building equitable conversations that balanced scientific rigor and community understanding.

DISCUSSION: Our approach allowed for a rich dialogue to emerge. Points of connection and disconnection between community members and scientists offered important guidance for emerging areas of genomic inquiry.

CONCLUSION: Our study presents a robust foundation for future efforts to engage diverse communities in CBPR, particularly on healthcare concerns affecting UBR communities.

Author List

Thareja SK, Yang X, Upama PB, Abdullah A, Torres SP, Cocroft LJ, Bubolz M, McGaughey K, Lou X, Kamaraju S, Ahamed SI, Madiraju P, Kwitek AE, Whittle J, Franco Z

Authors

Zeno Franco PhD Associate Professor in the Emergency Medicine department at Medical College of Wisconsin
Sailaja Kamaraju MD Associate Professor in the Medicine department at Medical College of Wisconsin
Anne E. Kwitek PhD Professor in the Physiology department at Medical College of Wisconsin
Jeffrey Whittle MD Professor in the Medicine department at Medical College of Wisconsin




MESH terms used to index this publication - Major topics in bold

Community-Based Participatory Research
Genomics
Humans
Wisconsin