Innovation in Large-Scale Research Programs: Elevating Research Participants to Governance Roles Through the All of Us Research Program Engagement Core

Abstract

Problem: Despite the successes of community-engaged research in advancing research relevance and health equity for diverse communities, the impact of this research has been limited to local and regional programs. Engaging diverse community voices in large-scale, national research programs represents a paradigm shift in biomedical research. Still, disconnects remain between research decision makers and the communities they serve, impeding richer, bidirectional engagement.

Approach: An engagement core team was established within National Institutes of Health All of Us Research Program (AoURP) in 2018 to synthesize community-engaged research practices and establish infrastructure that operationalizes diverse research participant engagement. The authors integrated research participants as "participant partners" within the AoURP governance, an approach that is embedded into the engagement core's 3 aims: (1) integrate a diverse pool of participants into the program, (2) identify and meaningfully engage a cadre of diverse participants into program governance, and (3) assess the impact of such engagement on research. Participant partners are compensated as consultants at approximately $50/hour.

Outcomes: As of August 2022, more than 515,000 individuals consented to participate in the AoURP, with more than 49% representing racial/ethnic minorities. The authors invited participants to self-nominate if interested in engaging in research working groups, decision making, and governance. Also, consortium partners nominated individuals on AoURP community advisory and/or participant advisory boards to serve as participant ambassadors. Ten individuals were selected as participant partners for the 2022-2025 term. Eight serve on the steering committee; of those, 4 serve on the executive committee; 2 more serve on the advisory panel. An additional 23 serve as participant ambassadors.

Next steps: The authors continue to increase the number of research participants serving as engaged partners in the program. Engagement approaches will be systematically evaluated with the goal of adoption by other large-scale research programs.