The OneFlorida Data Trust: a centralized, translational research data infrastructure of statewide scope

Abstract The OneFlorida Data Trust is a centralized research patient data repository created and managed by the OneFlorida Clinical Research Consortium (“OneFlorida”). It comprises structured electronic health record (EHR), administrative claims, tumor registry, death, and other data on 17.2 million...

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Published inJournal of the American Medical Informatics Association : JAMIA Vol. 29; no. 4; pp. 686 - 693
Main Authors Hogan, William R, Shenkman, Elizabeth A, Robinson, Temple, Carasquillo, Olveen, Robinson, Patricia S, Essner, Rebecca Z, Bian, Jiang, Lipori, Gigi, Harle, Christopher, Magoc, Tanja, Manini, Lizabeth, Mendoza, Tona, White, Sonya, Loiacono, Alex, Hall, Jackie, Nelson, Dave
Format Journal Article
LanguageEnglish
Published England Oxford University Press 15.03.2022
Subjects
Case Reports
Electronic Health Records
Florida
Humans
Privacy
Translational Research, Biomedical
Florida
data warehouse
data quality
data management
data analysis
Clinical Data Research Network
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Summary:Abstract The OneFlorida Data Trust is a centralized research patient data repository created and managed by the OneFlorida Clinical Research Consortium (“OneFlorida”). It comprises structured electronic health record (EHR), administrative claims, tumor registry, death, and other data on 17.2 million individuals who received healthcare in Florida between January 2012 and the present. Ten healthcare systems in Miami, Orlando, Tampa, Jacksonville, Tallahassee, Gainesville, and rural areas of Florida contribute EHR data, covering the major metropolitan regions in Florida. Deduplication of patients is accomplished via privacy-preserving entity resolution (precision 0.97–0.99, recall 0.75), thereby linking patients’ EHR, claims, and death data. Another unique feature is the establishment of mother-baby relationships via Florida vital statistics data. Research usage has been significant, including major studies launched in the National Patient-Centered Clinical Research Network (“PCORnet”), where OneFlorida is 1 of 9 clinical research networks. The Data Trust’s robust, centralized, statewide data are a valuable and relatively unique research resource.
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ISSN:1527-974X
1067-5027
1527-974X
DOI:10.1093/jamia/ocab221