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

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 includ

SUBMITTER: Hammack-Aviran C 

PROVIDER: S-EPMC10685928 | biostudies-literature | 2023 Nov

REPOSITORIES: biostudies-literature