The All of Us Research Program: Data quality, utility, and diversity

• Published in: Patterns (New York, N.Y.) N.Y.), 2022-08, Vol.3 (8), p.100570, Article 100570
• Main Authors: Ramirez, Andrea H., Halvorson, Alese, Qian, Jun, Mayo, Kelsey, Basford, Melissa, Deflaux, Nicole, Muthuraman, Karthik N., Xu, Hua, Wilkins, Consuelo, Anton-Culver, Hoda, Boerwinkle, Eric, Cohn, Elizabeth, Schully, Sheri D., Argos, Maria, Cronin, Robert M., O’Donnell, Christopher, Fouad, Mona, Greenland, Philip, Hebbring, Scott J., Karlson, Elizabeth W., Khatri, Parinda, Korf, Bruce, Sodeke, Stephen, Wilbanks, John, Hentges, Justin, Mockrin, Stephen, Lunt, Christopher, Devaney, Stephanie A., Gebo, Kelly, Denny, Joshua C., Harris, Paul A., Roden, Dan M., Ahmedani, Brian, Cole Johnson, Christine D., Ahsan, Habib, Antoine-LaVigne, Donna, Topol, Eric, Jain, Praduman, Behringer, Melissa, Gharavi, Ali G., Hripcsak, George, Bier, Louise, Hebbring, Scott Joseph, Burnside, Elizabeth, Drezner, Marc K., Channamsetty, Veena, Montalvo, Wanda, Chinea, Carmen, Jenks, Nancy, Cicek, Mine, Thibodeau, Steve, Collier, Ever, Winkler, Joyce, Corcoran, John, Daviglus, Martha, Denny, Joshua, Doheny, Kim, Eichler, Evan, Lennon, Niall, Gabriel, Stacey, Gibbs, Richard, Gil Rico, Edgar M., Glazer, David, Hogan, William R., Pollan, Cliff, Okun, Sally, Smoller, Jordan, Ross, Margaret Elizabeth, Kaushal, Rainu, Kheterpal, Vik, Ojo, Akinlolu, Moreno, Francisco A., Menon, Usha, Malik-Gagnon, Lynda, Mangravite, Lara, Marallo, Adria, Visweswaran, Shyam, Reis, Steven, Moore, John, Talavera, Gregory, O'Donnell, Christopher, Ohno-Machado, Lucila, Randal, Fornessa, Theodorou, Andreas A., Roxas-Murray, Mercedita, Stark, Louisa, Tepp, Ronnie, Topper, Scott, Weidman, Lisa, Weiss, Scott T., Wellis, David, Whittle, Jeffrey, Wilson, Amanda, Zuchner, Stephan, Zwick, Michael E.
• Format: Article
• Language: English
• Subjects: All of Us Research Program; cloud-based analytics; cohort study; Descriptor; electronic health records; precision medicine
• ISSN: 2666-3899; 2666-3899
• DOI: 10.1016/j.patter.2022.100570

The All of Us Research Program seeks to engage at least one million diverse participants to advance precision medicine and improve human health. We describe here the cloud-based Researcher Workbench that uses a data passport model to democratize access to analytical tools and participant information including survey, physical measurement, and electronic health record (EHR) data. We also present validation study findings for several common complex diseases to demonstrate use of this novel platform in 315,000 participants, 78% of whom are from groups historically underrepresented in biomedical research, including 49% self-reporting non-White races. Replication findings include medication usage pattern differences by race in depression and type 2 diabetes, validation of known cancer associations with smoking, and calculation of cardiovascular risk scores by reported race effects. The cloud-based Researcher Workbench represents an important advance in enabling secure access for a broad range of researchers to this large resource and analytical tools. •The All of Us Research Program has released data for over 315,000 participants•Demonstration projects support the utility and validity of the All of Us dataset•The cloud-based Researcher Workbench provides secure, low-cost compute power The engagement of participants in the research process and broad availability of data to diverse researchers are essential elements in building precision medicine equitably available for all. The NIH has established the ambitious All of Us Research Program to build one of the most diverse health databases in history with tools to support research to improve human health. Here, we present the initial launch of the Researcher Workbench with data types including surveys, physical measurements, and electronic health record data with validation studies to support researcher use of this novel platform. Broad access for researchers to data like these is a critical step in returning value to participants seeking to support the advancement of precision medicine and improved health for all. The initial release of the All of Us Research Program data reflects diverse participants with broad information, reproduces known associations, and provides rich opportunities for research. The dataset and tools form a strong foundation for cohort growth and future research, advancing the program mission to improve human health and advance precision medicine.