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The N3C governance ecosystem: A model socio-technical partnership for the future of collaborative analytics at scale

  • Christine Suver
  • , Jeremy Harper
  • , Johanna Loomba
  • , Mary Saltz
  • , Julian Solway
  • , Alfred Jerrod Anzalone
  • , Kellie Walters
  • , Emily Pfaff
  • , Anita Walden
  • , Julie Mcmurry
  • , Christopher G. Chute
  • , Melissa Haendel
  • Sage Bionetworks
  • Owl Health Works LLC
  • University of Virginia
  • The University of Chicago
  • University of Nebraska Medical Center
  • University of North Carolina at Chapel Hill
  • University of Colorado Anschutz Medical Campus
  • Johns Hopkins University

Research output: Contribution to journalArticlepeer-review

8 Scopus citations

Abstract

The National COVID Cohort Collaborative (N3C) is a public-private-government partnership established during the Coronavirus pandemic to create a centralized data resource called the N3C data enclave. This resource contains individual-level health data from participating healthcare sites nationwide to support rapid collaborative analytics. N3C has enabled analytics within a cloud-based enclave of data from electronic health records from over 17 million people (with and without COVID-19) in the USA. To achieve this goal of a shared data resource, N3C implemented a shared governance strategy involving stakeholders in decision-making. The approach leveraged best practices in data stewardship and team science to rapidly enable COVID-19-related research at scale while respecting the privacy of data subjects and participating institutions. N3C balanced equitable access to data, team-based scientific productivity, and individual professional recognition - a key incentive for academic researchers. This governance approach makes N3C research sustainable and effective beyond the initial days of the pandemic. N3C demonstrated that shared governance can overcome traditional barriers to data sharing without compromising data security and trust. The governance innovations described herein are a helpful framework for other privacy-preserving data infrastructure programs and provide a working model for effective team science beyond COVID-19.

Original languageEnglish
Article numbere252
JournalJournal of Clinical and Translational Science
Volume7
Issue number1
DOIs
StatePublished - Nov 14 2023

Keywords

  • Biorepository
  • COVID-19
  • CTSA
  • data governance
  • decision-making
  • ethics
  • regulatory support

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