Pulse Brain · Growing Health Evidence Index
Tier 3 — Observational / field trialPeer-reviewed

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

Andrea H. Ramirez, Lina Sulieman, David J. Schlueter, Alese E. Halvorson, Jun Qian, Francis Ratsimbazafy, Roxana Loperena, Kelsey Mayo, Melissa Basford, Nicole Deflaux, Karthik Muthuraman, Karthik Natarajan, Abel Kho, Hua Xu, Consuelo H. Wilkins, Hoda Anton‐Culver, Eric Boerwinkle, Mine Cicek, Cheryl R. Clark, Ellen G. Cohn, Lucila Ohno-Machado, Sheri D. Schully, Brian K. Ahmedani, Maria Argos, Robert M. Cronin, Christopher J. O’Donnell, Mona N. Fouad, David B. Goldstein, Philip Greenland, Scott J. Hebbring, Elizabeth W. Karlson, Parinda Khatri, Bruce Korf, Jordan W. Smoller, Stephen Sodeke, John Wilbanks, Justin Hentges, Stephen Mockrin, Chris Lunt, Stephanie A. Devaney, Kelly A. Gebo, Joshua C. Denny, Robert J. Carroll, David Glazer, Paul A. Harris, George Hripcsak, Anthony Philippakis, Dan M. Roden, Brian K. Ahmedani, Christine D. Cole Johnson, Habib Ahsan, Donna Antoine‐LaVigne, Glendora Singleton, Hoda Anton‐Culver, Eric J. Topol, Katie Baca-Motes, Steven R. Steinhubl, James B. Wade, Mark Begale, Praduman Jain, Scott Sutherland, Beth A. Lewis, Bruce Korf, Melissa Behringer, Ali G. Gharavi, David B. Goldstein, George Hripcsak, Louise Bier, Eric Boerwinkle, Murray H. Brilliant, Narayana S. Murali, Scott J. Hebbring, Dorothy Farrar‐Edwards, Elizabeth S. Burnside, Marc K. Drezner, Amy E. Taylor, Veena Channamsetty, Wanda Montalvo, Yashoda Sharma, Carmen Chinea, Nancy Piper Jenks, Mine Cicek, S. N. Thibodeau, Beverly Holmes, Eric Schlueter, Ever Collier, Joyce Winkler, John Corcoran, Nick D’Addezio, Martha L. Daviglus, Robert A. Winn, Consuelo H. Wilkins, Dan M. Roden, Joshua C. Denny, Kim Doheny, Debbie A. Nickerson, Evan E. Eichler, Gail P. Jarvik, Gretchen Funk, Anthony Philippakis

Patterns · 2022

Read source ↗ All evidence

Summary

This paper describes the All of Us Research Program's cloud-based Researcher Workbench, a data-sharing infrastructure designed to democratise access to precision medicine research across diverse populations. Using data from 315,000 participants (78% from underrepresented groups), the authors present validation studies demonstrating the platform's utility for detecting disease associations and identifying racial disparities in medication usage patterns. The work represents a methodological advance in enabling broad researcher access to large-scale, diverse health data whilst maintaining data security through a 'data passport' governance model.

UK applicability

The All of Us programme is US-based and focuses on American health disparities and precision medicine infrastructure; however, the technical architecture and data governance model may inform comparable efforts in UK biomedical research, particularly initiatives seeking to improve diversity and accessibility in large biobanks such as the UK Biobank or NHS-linked cohorts.

Key measures

Participant diversity metrics (78% from historically underrepresented groups, 49% non-White races); medication usage patterns by race in depression and type 2 diabetes; cancer-smoking associations; cardiovascular risk scores stratified by reported race

Outcomes reported

The study evaluated data quality, utility, and diversity within the All of Us Research Program's cloud-based Researcher Workbench platform, which aggregates survey, physical measurement, and electronic health record data from over 315,000 participants. Validation findings demonstrated the platform's ability to replicate known disease associations and detect medication usage pattern differences across racial groups.

Theme
Measurement & metrics
Subject
Measurement methods & nutrient profiling
Study type
Research
Study design
Observational cohort with validation studies
Source type
Peer-reviewed study
Status
Published
Geography
United States
System type
Human clinical
DOI
10.1016/j.patter.2022.100570
Catalogue ID
BFmoso8xrl-hbw8cd

Topic tags

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