Cited by 553Research Data Management PracticesElectronic Health Records SystemsCOVID-19 and healthcare impacts

The National COVID Cohort Collaborative (N3C): Rationale, design, infrastructure, and deployment

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Haendel, Melissa A, Chute, Christopher G, Bennett, Tellen D, Eichmann, David A, Guinney, Justin, Kibbe, Warren A, Payne, Philip R O, Pfaff, Emily R +49 more·2021·Journal of the American Medical Informatics Association

Abstract

Objective: Coronavirus disease 2019 (COVID-19) poses societal challenges that require expeditious data and knowledge sharing. Though organizational clinical data are abundant, these are largely inaccessible to outside researchers. Statistical, machine learning, and causal analyses are most successful with large-scale data beyond what is available in any given organization. Here, we introduce the National COVID Cohort Collaborative (N3C), an open science community focused on analyzing patient-level data from many centers. Materials and Methods: The Clinical and Translational Science Award Program and scientific community created N3C to overcome technical, regulatory, policy, and governance barriers to sharing and harmonizing individual-level clinical data. We developed solutions to extract, aggregate, and harmonize data across organizations and data models, and created a secure data enclave to enable efficient, transparent, and reproducible collaborative analytics. Results: Organized in inclusive workstreams, we created legal agreements and governance for organizations and researchers; data extraction scripts to identify and ingest positive, negative, and possible COVID-19 cases; a data quality assurance and harmonization pipeline to create a single harmonized dataset; population of the secure data enclave with data, machine learning, and statistical analytics tools; dissemination mechanisms; and a synthetic data pilot to democratize data access. Conclusions: The N3C has demonstrated that a multisite collaborative learning health network can overcome barriers to rapidly build a scalable infrastructure incorporating multiorganizational clinical data for COVID-19 analytics. We expect this effort to save lives by enabling rapid collaboration among clinicians, researchers, and data scientists to identify treatments and specialized care and thereby reduce the immediate and long-term impacts of COVID-19.

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Authors
Haendel, M. A., Chute, C. G., Bennett, T. D., Eichmann, D. A., Guinney, J., Kibbe, W. A., Payne, P. R. O., Pfaff, E. R., Robinson, P. N., Saltz, J. H., Spratt, H., Suver, C., Wilbanks, J., Wilcox, A. B., Williams, A. E., Wu, C., Blacketer, C., Bradford, R. L., Cimino, J. J., Clark, M., Colmenares, E. W., Francis, P. A., Gabriel, D., Graves, A., Hemadri, R., Hong, S. S., Hripscak, G., Jiao, D., Klann, J. G., Kostka, K., Lee, A. M., Lehmann, H. P., Lingrey, L., Miller, R. T., Morris, M., Murphy, S. N., Natarajan, K., Palchuk, M. B., Sheikh, U., Solbrig, H., Visweswaran, S., Walden, A., Walters, K. M., Weber, G. M., Zhang, X. T., Zhu, R. L., Amor, B., Girvin, A. T., Manna, A., Qureshi, N., Kurilla, M. G., Michael, S. G., Portilla, L. M., Rutter, J. L., Austin, C. P., Gersing, K. R., & the N3C Consortium
Affiliations
  • Oregon State University (US)
  • Johns Hopkins University (US)
  • University of Colorado Anschutz (US)
  • University of Iowa (US)
  • Sage Bionetworks (US)
  • Duke University (US)
  • Washington University in St. Louis (US)
  • University of North Carolina at Chapel Hill (US)
  • Jackson Laboratory (US)
  • Stony Brook University (US)
  • The University of Texas Medical Branch at Galveston (US)
  • University of Washington (US)
  • Tufts Medical Center (US)
  • Scripps Research Institute (US)
  • Janssen Research & Development (United States) (US)
  • University of Alabama at Birmingham (US)
  • National Center for Advancing Translational Sciences (US)
  • Columbia University (US)
  • Harvard University (US)
  • IQVIA (United States) (US)
  • TriNetX (United States) (US)
  • Tufts University (US)
  • University of Pittsburgh (US)
  • Mass General Brigham (US)
  • Columbia University Irving Medical Center (US)
  • Palantir Technologies, Palo Alto, California, USA
  • National Institutes of Health (US)
  • Office of the Director (US)
  • National Center for Advancing Translational Science, Bethesda, Maryland, USA
Corresponding author
  • Haendel, Melissa A
  • Chute, Christopher G
Venue
Journal of the American Medical Informatics Association
Published
2020-08-17
Volume
28
Issue
3
Pages
427-443
ISSN
  • 1067-5027 (ISSN-L)
  • 1527-974X
OpenAlex
W3049452588
Cited by
553
References
10
Citations by year
2026: 52 · 2025: 79 · 2024: 107 · 2023: 123 · 2022: 112 · 2021: 73 · 2020: 7
FWCI
74.16
Type
journal article
Language
en
Open access
Locations
  • Journal of the American Medical Informatics Association (publishedVersion, cc-by-nc)
  • PubMed Central (publishedVersion, cc-by-nc)
  • PubMed (publishedVersion)
  • IUScholarWorks (Indiana University) (submittedVersion, cc-by-nc)
  • eScholarship (California Digital Library) (submittedVersion, cc-by-nc)
  • Digital Commons@Becker (Washington University School of Medicine) (submittedVersion, cc-by-nc)
  • The Mouseion at the JAXlibrary (Jackson Laboratory) (submittedVersion, cc-by-nc)
Funders
  • National Institutes of Health
  • National Center for Advancing Translational Sciences Institute (U24TR002306)
Topics
  • Physical Sciences › Computer Science › Information Systems › Research Data Management Practices
  • Health Sciences › Health Professions › Health Information Management › Electronic Health Records Systems
  • Health Sciences › Medicine › Oncology › COVID-19 and healthcare impacts
Keywords
N3C, COVID-19 pandemic, open science, clinical data sharing, data harmonization, data governance, data quality assurance, synthetic data
MeSH terms
Intersectoral Collaboration, Data Science, Data Analysis, COVID-19, Humans, National Institutes of Health (U.S.), United States, Computer Security, Ethics Committees, Research, Government Regulation, Information Dissemination

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