All of Us Research Program Trans-America Consortium of the HCSRN

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Abstract The All of Us Research Program (AoURP), which started enrolling participants in 2017, is an ambitious, forward-looking and futuristic national endeavor to create and sustain a research data platform unique in the world, with the ultimate objective of advancing effective health care approaches and interventions that are exquisitely and precisely tailored to individual patients. Known as “Precision Medicine” or “Precision Health” in which preventive measures, diagnoses and treatments are designed specifically for an individual based on their genetics, exposures, biomarkers and personal preferences, the AoURP was envisioned as a mechanism for overcoming a number of significant research barriers in order to accelerate the achievement of this revolutionary goal. The AoURP is specifically designed to address current issues that plague precision medicine/health research efforts, including small sample sizes of cases and population sampling frames, inadequate population diversity, limited breadth of data, gaps in patient followup, incompatible data platforms, restricted data access, challenges in obtaining IRB approvals and cost. The research platform of core participants is already approaching that of the successful UK biobank, but is far more diverse in terms of population age, race, ethnicity and geography. Electronic health records of core participants are uploaded as well as genetics, physical measurement and survey data. Over 5400 researchers are already registered on the platform. Investigators from six integrated delivery networks spanning six states (MA, MI, MN, ND, TX, WI) of the Health Care Systems Research Network, Henry Ford Health and Corewell Health, Baylor Scott & White, Essentia Health, Univ Massachusetts/Reliant Medical Group, and HealthPartners, established the All of Us Trans-America Consortium for the HCSRN (TACH) to support the mission of the AoURP. Funded in 2016, TACH shares the undergirding philosophy of the NIH and AoURP and has demonstrated this through our work during the last 6+ years. We continue to have the scientists and staff, resources and experience to contribute to growing and sustaining the program and using the AoURP research platform., In this new award period, the TACH network proposes to expand geographically with respect to inclusion of those historically underserved in biomedical research by adding two new institutions St Louis University / SSM Health and Kaiser-Permanente Northwest, as well as eight more states (OH, IN, SD, NH MO, OK, OR, WA) without current HPO coverage, for the purpose of better serving the program’s objectives. Using organizational performance methods to ensure ethical practices, quality, and continuous improvement to meet the AoURP’s goals and milestones, our Specific Aims are: 1) a. Implement and geographically expand a dedicated AoURP-centered comprehensive patient and community outreach and engagement program and b. Recruit and enroll 12,000 new core participant partners per year, with a focus on individuals historically underrepresented in biomedical research to assure an expansive representation of genetic, environmental, social and disease variation in the AoURP core population; 2) Sustain and expand the established AoURP’s TACH health care provider consortium’s multi-site infrastructure to retain previously and newly enrolled participant partners to ensure that the rich population diversity in the AoURP amplifies and persists and, 3) Actively participate in AoURP committees, provide subject matter expertise, and promote scientific activity using the AoURP research platform within the TACH consortium and through active outreach by TACH investigators to their already established scientific networks through presentations about the program at national meetings.