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 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.

Keywords: Clinical Data Research Network; data analysis; data management; data quality; data warehouse.

Figure 1.

Map of contributing partners to the OneFlorida Clinical Research Consortium, where each color represents a healthcare partner organization and each dot of that color represents a physical location operated by that organization, such as a clinic or hospital.

Figure 2.

Overall scheme of the Data Trust, showing data sources flowing into the Data Trust, and research workflows for using the data (solid lines represent ongoing routine data flows and dashed lines represent data sources under development, but nonetheless used for specific studies in the past). A robust honest broker system enables patient re-identification for IRB approved protocols to enable participant recruitment. PROs: Patient-Reported Outcomes; ETL: extract, transform, and load; IDs: identifiers; IRB: Institutional Review Board.

Figure 3.

Geographical distribution of coverage of Florida by the OneFlorida Data Trust. The figure was generated from OneFlorida patients seen during 2017–2021, totaling 9.2 million patients thus far into 2021. 1 dot = 100 patients.