Knowledge-Driven Data Sharing Governance: Developing a data provenance model for constructing context-aware data sharing frameworks for linkage data within the All of Us Research Program.

Health data access and sharing in the U.S. have been hindered by complex privacy and security conditions, limiting research and improvement of health outcomes. This challenge is even greater in minority and sensitive populations - who would benefit most from integrative research. The All of Us Research Program is a National Institutes of Health funded initiative aiming to enhance health research through the analysis of lifestyle, environment, and genetics data from over one million participants, with a focus on communities historically underrepresented in biomedical research. The program is enhancing the utility of data by incorporating passive data streams, such as claims, electronic health records (EHRs), environmental, geocodes, mortality, and residential history. Further, through the use of national health information exchange standards, All of Us also aims to address technical challenges in linking EHRs from health information networks to deliver a more complete longitudinal participant record. However, such an initiative necessitates a thoughtful approach through data awareness, advancing data access in ways that preserve individual privacy while increasing scientific utility. Here, we describe our privacy-preserving record linkage (PPRL) and data privacy risk disclosure control strategy, emphasizing fit-for-purpose data provisioning. Our knowledge-driven data ecosystem architecture leverages a combination of PPRL, data provenance, and geocoding at multiple levels to support context-aware data sharing granular access control.

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Publication Details

Journal
International Journal for Population Data Science
Published
2024-09-10
DOI
https://doi.org/10.23889/ijpds.v9i5.2883
Primary Topic
Scientific Computing and Data Management
Type
article
Field-Weighted Citation Impact
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article

Knowledge-Driven Data Sharing Governance: Developing a data provenance model for constructing context-aware data sharing frameworks for linkage data within the All of Us Research Program.

Richard A. Moffitt, Brian Gugerty, Lewis E. Berman, Daniel Barth-Jones et al.
International Journal for Population Data Science
Scientific Computing and Data Management
article

Knowledge-Driven Data Sharing Governance: Developing a data provenance model for constructing context-aware data sharing frameworks for linkage data within the All of Us Research Program.

Richard A. Moffitt, Brian Gugerty, Lewis E. Berman, Daniel Barth-Jones, Andrea H. Ramirez, Jimmy Phuong, Melissa Haendel, Jasmin Phua, Chris Chute, Charisse Madlock‐Brown, Emily Pfaff, David Galey, Nandita Rahman, Anjene Musick
article en

Abstract

Health data access and sharing in the U.S. have been hindered by complex privacy and security conditions, limiting research and improvement of health outcomes. This challenge is even greater in minority and sensitive populations - who would benefit most from integrative research. The All of Us Research Program is a National Institutes of Health funded initiative aiming to enhance health research through the analysis of lifestyle, environment, and genetics data from over one million participants, with a focus on communities historically underrepresented in biomedical research. The program is enhancing the utility of data by incorporating passive data streams, such as claims, electronic health records (EHRs), environmental, geocodes, mortality, and residential history. Further, through the use of national health information exchange standards, All of Us also aims to address technical challenges in linking EHRs from health information networks to deliver a more complete longitudinal participant record. However, such an initiative necessitates a thoughtful approach through data awareness, advancing data access in ways that preserve individual privacy while increasing scientific utility. Here, we describe our privacy-preserving record linkage (PPRL) and data privacy risk disclosure control strategy, emphasizing fit-for-purpose data provisioning. Our knowledge-driven data ecosystem architecture leverages a combination of PPRL, data provenance, and geocoding at multiple levels to support context-aware data sharing granular access control.

International Journal for Population Data ScienceVol. 9(5)
University of North Carolina at Chapel Hill (US), University of Iowa (US), Johns Hopkins University (US), Emory University (US), National Health Research Institutes (TW), University of Washington (US), DATADVANCE (France) (FR), National Institute of Allergy and Infectious Diseases (US)
Openalex Percentile: Top 83%
Scientific Computing and Data Management
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