The Participant Center: Empowering All of Us Research Program participation across the United States

Scripps Research Institute, The, La Jolla CA

Investigators

Linked publications & trials

Abstract

A. Abstract The Participant Center (TPC) will 1) maintain capabilities that enable full All of Us Research Program (All of Us) participation across the United States (US) and 2) lead innovation in the participant experience in support of program goals. TPC is an alliance of more than 25 partners, led by Scripps Research. TPC makes it possible for interested individuals anywhere in the U.S. to join and remain engaged in All of Us. TPC will reach individuals where they are through approaches ranging from light touch digital outreach to high touch, in-person one-on-one support. TPC strategies and tactics aim to support the recruitment of over 200,000 new baseline participants, while upholding the program’s goal to reflect the rich diversity of the US by including 50% participants who have been historically underrepresented in biomedical research (UBR) based on their race and/or ethnicity, and 80% participants who are UBR based on any program-defined category. We aim to maintain at least 75% active retention, in line with TPC’s current active retention rate of 86%. Drawing on our experience in All of Us since 2016, including the recruitment of over 97,000 participants and support of biospecimen collection from over 44,000 participants, we will improve on the processes and relationships we have built to further the program’s mission to enable individualized health care. TPC will utilize All of Us Participant Labs (APL) to implement participant-facing innovation that accelerate progress toward program goals. Employing streamlined processes and dedicated innovation infrastructure to carry out a portfolio of high risk/high reward initiatives, we will manage an innovation pipeline while minimizing program risk. Data-driven decisions will be made in each step of the process, from literature reviews informing idea development to impact evaluations that measure participant responses. Opportunity cost will be carefully considered, and projects will be abandoned if they are a suboptimal use of resources. Initiative ideas will be solicited from all consortium stakeholders and selected through a process that includes alignment with NIH goals and roadmaps and the APL focus areas of enrollment, engagement, retention, biospecimen collection, and research data collection. Beginning with APL initiatives, we aim to combine novel data collection with multi-modal artificial intelligence (AI) to return personalized information and improve participant health.