The All of Us Data and Research Center: Creating a Secure, Scalable, and Sustainable Ecosystem for Biomedical Research

• Published in: Annual review of biomedical data science Vol. 6; no. 1; pp. 443 - 464
• Main Authors: Mayo, Kelsey R, Basford, Melissa A, Carroll, Robert J, Dillon, Moira, Fullen, Heather, Leung, Jesse, Master, Hiral, Rura, Shimon, Sulieman, Lina, Kennedy, Nan, Banks, Eric, Bernick, David, Gauchan, Asmita, Lichtenstein, Lee, Mapes, Brandy M, Marginean, Kayla, Nyemba, Steve L, Ramirez, Andrea, Rotundo, Charissa, Wolfe, Keri, Xia, Weiyi, Azuine, Romuladus E, Cronin, Robert M, Denny, Joshua C, Kho, Abel, Lunt, Christopher, Malin, Bradley, Natarajan, Karthik, Wilkins, Consuelo H, Xu, Hua, Hripcsak, George, Roden, Dan M, Philippakis, Anthony A, Glazer, David, Harris, Paul A
• Format: Journal Article
• Language: English
• Published: United States Annual Reviews 10.08.2023
• Subjects: Biomedical Research; data ecosystem; data integration; data privacy; diversity; Ecosystem; electronic health records; Humans; Population Health; Precision Medicine; precision medicine; diversity; data privacy; data ecosystem; electronic health records; data integration
• ISSN: 2574-3414; 2574-3414
• DOI: 10.1146/annurev-biodatasci-122120-104825

The All of Us Research Program's Data and Research Center (DRC) was established to help acquire, curate, and provide access to one of the world's largest and most diverse datasets for precision medicine research. Already, over 500,000 participants are enrolled in All of Us , 80% of whom are underrepresented in biomedical research, and data are being analyzed by a community of over 2,300 researchers. The DRC created this thriving data ecosystem by collaborating with engaged participants, innovative program partners, and empowered researchers. In this review, we first describe how the DRC is organized to meet the needs of this broad group of stakeholders. We then outline guiding principles, common challenges, and innovative approaches used to build the All of Us data ecosystem. Finally, we share lessons learned to help others navigate important decisions and trade-offs in building a modern biomedical data platform.