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ZENODO
Report . 2026
License: CC BY
Data sources: ZENODO
ZENODO
Report . 2026
License: CC BY
Data sources: Datacite
ZENODO
Report . 2026
License: CC BY
Data sources: Datacite
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Governance and Multi-Institutional Data Stewardship: Frameworks for Large-Scale Precision Research (Motivated by the All of Us Research Program on Nationally Integrated, Participant-Centered Data Infrastructure by Denny et al.)

Authors: Pietrobon, Ricardo;

Governance and Multi-Institutional Data Stewardship: Frameworks for Large-Scale Precision Research (Motivated by the All of Us Research Program on Nationally Integrated, Participant-Centered Data Infrastructure by Denny et al.)

Abstract

This report examines governance and multi-institutional data stewardship frameworks for large-scale precision health research, motivated by the All of Us Research Program. As biomedical research increasingly relies on diverse, longitudinal, and sensitive data sources—such as electronic health records, biospecimens, and digital health data—traditional fragmented governance models have proven insufficient for ensuring scalability, reproducibility, and ethical compliance. The report highlights the need for centralized governance approaches that integrate standardized access controls, harmonized data models, and participant-centered oversight to enable secure and efficient data sharing across institutions. Using the All of Us program as a case study, the report illustrates how governance mechanisms embedded directly within technical infrastructure—such as cloud-based environments, tiered access systems, and unified ethical oversight—can transform data governance from a barrier into an enabler of research. Key dataset characteristics, including interoperability, standardization, and support for fine-grained access control, are shown to be essential for effective stewardship. While centralized governance frameworks offer strengths in transparency, scalability, and consistency, they also present challenges related to rigidity and adaptability. The report concludes that future governance models must evolve toward dynamic, evidence-informed systems that balance innovation with privacy, trust, and ethical responsibility in multi-institutional research environments.

  • BIP!
    Impact byBIP!
    selected citations
    These citations are derived from selected sources.
    This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    0
    popularity
    This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
    Average
    influence
    This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    Average
    impulse
    This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
    Average
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selected citations
These citations are derived from selected sources.
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
0
Average
Average
Average
Green