Including participants as partners is a central principle of the All of Us Research Program. Beginning in April 2018, the program has included participant representatives in their work and governance. Today the program includes 34 participant partners, who serve on the Steering Committee, the Executive Committee, and the Advisory Panel and as Participant Ambassadors. These individuals help support the program’s design, implementation, and governance, including by serving on committees, boards, and task forces. They provide input on specific aspects of the program, such as research priorities, participant retention, privacy and security, and the meaningful return of information to participants.
Engagement with these participant partners is administered by the All of Us Engagement Core, led by Consuelo H. Wilkins, M.D., M.S.C.I., Senior Vice President and Senior Associate Dean for Health Equity and Inclusive Excellence at Vanderbilt University Medical Center in Nashville, Tennessee. The Engagement Core is composed of national leaders in medicine, engagement, and ethics and—in collaboration with NIH—serves a vital role in ensuring that the All of Us Research Program elevates participants’ voices throughout the program.