The All of Us Participant Ambassador and Governance Model is one way to include participants’ ideas in the direction of a large research network. In this model, a participant is defined as someone who is enrolled in the research program. There are four different roles that a participant could fill. Each participant fills their role for three years and is paid for their time (between $4,200 and $8,000 per year).

Participants’ responsibilities vary based on their role but include assisting with choosing the direction for research projects, making sure that All of Us meets its mission, and providing feedback on All of Us activities.

Making this model work required careful action. The model was developed by the Engagement Core under an OTA award to Vanderbilt University Medical Center. To use this model effectively, the All of Us engagement core identified a national group of participant partners, provided clear expectations and many resources for participant partners to use, delivered adequate training to set participant partners up for success, and utilized supportive environments for ongoing engagement. This work is done in collaboration with the All of Us Division of Engagement and Outreach (DEO).

Stage(s) of Research Process

• Study Planning: Participant partners assist with study planning activities such as choosing research questions, identifying priority populations, providing feedback on research methods, and choosing study outcomes.
• Study Conduct: Participant partners assist with creating enrollment and consent processes that work best for diverse populations, identifying the best ways to recruit future participants, providing alternative ideas about what the research results may mean, and bringing attention to factors that may not have been examined during the research study.
• Post-Study: Participant partners assist with creating materials to help with explaining research results (e.g., videos), and providing input on the best way to deliver research results to participants.

Who Might Benefit:

• Researchers can use the All of Us model for integrating participants’ opinions throughout research network and project decision-making. The model provides ideas for how to select, pay, and engage participants in research.
• Patients, Caregivers, and Patient Advocacy groups and Communities can use the All of Us model as an example of good community engagement and support this approach when asked to work with researchers to create research studies and research networks.

Key Takeaways and Examples in Practice:

• The All of Us team found that sharing research results to All of Us staff and leadership first, then with Participant Partners, and lastly sharing them consortium-wide was a best practice.
• Transparency of all views is important. By sharing all results, including the less positive ones, researchers and participant partners can identify where they can improve.
• Participant partners should be involved in decision-making throughout the entire research program, just like other members of the team.
• True participant and community engagement must have some element of demonstrated change in behavior, practice, or culture on behalf of the researchers, the research process, or the research institution.

This work was done with the direct support by each of the following partners who advance this work:

• Consuelo H. Wilkins, MD, MSCI (Principal Investigator), Selena McCoy Carpenter, Alecia Malin Fair, and Kayla Somerville (project team) – all from Vanderbilt University Medical Center
• Elizabeth G Cohn, RN, PhD, FAAN (Co-I) – from Northwell Health Feinstein Institute for Medical Research
• Melody S. Goodman, PhD (Co-I) – from New York University

Keywords: Collaborative Decision-Making; Equitable Engagement; Return on Research Value; Methods of Engagement; Researchers; Communities

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Links to Relevant Resources:

• Publication Describing the All of Us Participant Ambassador Model
• Publication Describing How to Engage Stakeholders in Genomic Research
• Publication Describing How to Integrate Participants into Research Operations
• Publication Describing All of Us Participant Perspectives on the Return of Value in Research
• All of Us Annual Engagement and Outreach Report
• Contact the NIH All of Us Research Program Division of Engagement and Outreach at [email protected]

Definitions for each engagement objective can be found in the glossary.