Supporting and sustaining engagement to retain strategies and disseminating research value in the All of Us Research Program

Brigham And Women'S Hospital, Boston MA

Investigators

Abstract

ABSTRACT The All of Us Research Program is a landmark longitudinal cohort study that aims to enroll 1 million or more participants reflecting the diversity of the United States and create a unique biomedical data resource that can equitably advance precision medicine and improve health. Since 2016, the All of Us New England Consortium (AoUNE) has contributed to the success of the national program by engaging, enrolling and retaining individuals in Eastern Massachusetts through a collaboration of Mass General Brigham (MGB), New England’s largest regional health system, and Boston Medical Center (BMC), the largest safety net hospital in the Northeast. In the process, we have designed and implemented robust procedures for participant retention strategies that leverage multimodal engage to retain strategies in diverse populations. To date, we have enrolled more than 37,000 Core participants of whom more than 79% come from communities underrepresented in biomedical research (UBR). We have achieved high retention of our participant partners (PPs), including both passive (87%) and active (>40%) retention rates. Importantly, we have contributed to consortium-wide activities that have led to successful scientific contributions to retention. The AoUNE PIs have led task forces to construct the Social Determinants of Health (SDOH) survey and the Mental Health surveys, which each have strong and growing response rates. The AoUNE PIs are active participants in All of Us engagement activities as Engagement lead within the national program, and locally with our Community Advisory Panel (CAP). We are well poised to support the Division of Engagement and Outreach to achieve the NIH All of Us Area of Interest 1 to focus on: • Aim 1: Supporting existing participants and retention efforts with a focus on UBR populations. • Aim 2: Sustaining engagement efforts and disseminating research findings to participants as a part of return of value. We propose a process that will develop evidence-based solutions/models for scalable program wide-efforts to support the shift from enrollment to an engage to retain model for the All of Us Research Program.