Including participants as partners is a central principle of the All of Us Research Program. Since April 2018, the program’s four inaugural participant representatives have been joined by 28 participants as partners for a total of 32 participant representatives across the program. They will serve on All of Us Research Program committees and help support the program’s design, implementation, and governance. A total of 8 individuals now serve on the program’s advisory and governing bodies—the Advisory Panel, Steering Committee, and Executive Committee. Twenty-two individuals 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. Participant Ambassadors will also serve on working groups and task forces.
The effort to include participant partners is being administered by the All of Us Engagement Core, led by Consuelo H. Wilkins, M.D., M.S.C.I., Vice President for Health Equity, 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—will serve a vital role in ensuring that the All of Us Research Program elevates participants’ voices throughout the program.