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. 2024 Dec 1;31(12):2940-2951.
doi: 10.1093/jamia/ocae265.

Equitable community-based participatory research engagement with communities of color drives All of Us Wisconsin genomic research priorities

Suma K Thareja  1   2 , Xin Yang  2 , Paramita Basak Upama  3 , Aziz Abdullah  4 , Shary Pérez Torres  5 , Linda Jackson Cocroft  6 , Michael Bubolz  7 , Kari McGaughey  2 , Xuelin Lou  1 , Sailaja Kamaraju  1 , Sheikh Iqbal Ahamed  3 , Praveen Madiraju  3 , Anne E Kwitek  1 , Jeffrey Whittle  1   2   8 , Zeno Franco  1   2   8
Affiliations

Equitable community-based participatory research engagement with communities of color drives All of Us Wisconsin genomic research priorities

Suma K Thareja et al. J Am Med Inform Assoc. .

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.

Keywords: NIH All of Us Research Program; community-based participatory research; ethnic and racial minorities; genomic research.

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Conflict of interest statement

None declared.

Figures

Figure 1.
Figure 1.
Slides from SIG presentations demonstrating visual storytelling. Photo 1A courtesy of Ézé Amos.
Figure 2.
Figure 2.
All of Us Research Program participant counts shown by 3-digit zip codes on a map of Wisconsin as of 9 November 2022.
Figure 3.
Figure 3.
AI-generated artwork (MidJourney AI) chosen in collaboration with the community to visually represent key concepts raised during SIG discussions and published with meeting notes on Medium.
See this image and copyright information in PMC

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References

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