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

Managing re-identification risks while providing access to the <i>All of Us</i> research program

Weiyi Xia, Melissa Basford, Robert J. Carroll, Ellen Wright Clayton, Paul A. Harris, Murat Kantacioglu, Yongtai Liu, Steve Nyemba, Yevgeniy Vorobeychik, Zhiyu Wan, Bradley Malin

Journal of the American Medical Informatics Association · 2023

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Summary

This paper describes the data protection framework and risk mitigation strategies employed by the All of Us Research Program to enable individual-level health data access whilst safeguarding participant privacy. Using state-of-the-art adversarial modelling on 329,084 participants, the authors confirmed that systematic data transformations (geographic generalisation, event suppression, date randomisation) achieved re-identification risks below federally accepted thresholds. The analysis revealed disparate risk profiles across demographic groups, highlighting the need for multipronged protection including authentication, monitoring, and enforcement mechanisms.

UK applicability

The findings are relevant to UK health research infrastructure and data governance frameworks such as the UK Biobank and NHS Digital initiatives, particularly regarding alignment of privacy protection standards and re-identification risk assessment methodologies with international best practices.

Key measures

Re-identification risk (95th percentile across all participants; variation by race, ethnicity, and gender); threshold compliance at ≤0.09

Outcomes reported

The study assessed re-identification risk for 329,084 participants in the All of Us Research Program using an adversarial model, confirming that expected risk did not exceed 0.09 (a federally accepted threshold). It examined how risk varied across participant demographics and described the multi-pronged data protection strategy employed.

Theme
Policy, governance & rights
Subject
Other / interdisciplinary
Study type
Research
Study design
Policy report
Source type
Peer-reviewed study
Status
Published
Geography
United States
System type
Other
DOI
10.1093/jamia/ocad021
Catalogue ID
BFmoso8xrl-bqlgjb

Topic tags

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