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Review
. 2023 Nov 27;13(11):e068100.
doi: 10.1136/bmjopen-2022-068100.

Integrating participants as partners in research governance and operations: an approach from the All of Us Research Program Engagement Core

Catherine Hammack-Aviran  1   2 , Alecia Malin Fair  3 , Melinda Aldrich  4 , Jennifer Richmond  5 , Selena McCoy Carpenter  6 , Karriem S Watson  7 , Elizabeth G Cohn  8 , Consuelo Hopkins Wilkins  9   6
Affiliations
Review

Integrating participants as partners in research governance and operations: an approach from the All of Us Research Program Engagement Core

Catherine Hammack-Aviran et al. BMJ Open. .

Abstract

Objectives: During the last two decades, researchers and funders increasingly recognised the value of engaging patients and communities in research. Despite progress, community engagement remains challenging. There are few examples of successful participant engagement in governance of large-scale research programmes. Here we describe efforts to engage participants as partners in new governance roles in the All of Us Research Program, a precision medicine research initiative which intends to enrol at least one million participants. Using intentional, participant-centric engagement strategies, the All of Us Engagement Core recruited and integrated a diverse group of participants into governance roles including Steering and Executive Committees. Evaluation measures included a survey to assess Consortium Members' readiness for participant engagement.

Results: Over a 3-year period, all items on the survey increased (higher readiness). Of the 291 respondents to the 2021 survey, respondents most frequently agreed that participant perspectives are essential (100%), participants understand enough to contribute meaningfully (94%) and participants should be involved in setting goals (96%). Respondents least frequently agreed that participants should have an equal voice in Working Groups (75%), Steering Committee (69%) and Executive Committee (63%).

Conclusion: In conclusion, participants can be effectively integrated into large-scale research governance, which is associated with increased researcher readiness for engagement.

Keywords: Clinical governance; PUBLIC HEALTH; Patient Participation.

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Conflict of interest statement

Competing interests: None declared.

Figures

Figure 1
Figure 1
All of Us Research Program Governance Structure. *Participant Partners serve on all groups except Consortium Training, †Modules task force refers to activities leading into participant provided information.
Figure 2
Figure 2
Responses to the 2019, 2020 and 2021 Readiness for Participant Engagement in Governance Surveys.
See this image and copyright information in PMC

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