How FL’s Centralized EHR Data Repository Supports Clinical Research

A centralized, statewide patient data repository has boosted the use of EHR data for clinical research in Florida, according to a new article published in JAMIA.

The OneFlorida Clinical Research Consortium is one of nine clinical research networks (CRNs) in the Patient-Centered Outcomes Research Institute’s (PCORI) National Patient-Centered Clinical Research Network (PCORnet) 2.0.

The OneFlorida Data Trust, created and managed by the OneFlorida Clinical Research Consortium, houses data on 17.2 million unique individuals dating from January 2012 through March 2021.

Ten healthcare systems across the state contribute EHR data to the repository. In total, OneFlorida estimates that its partners serve between 40 and 50 percent of the state’s population.

The data trust is different than other clinical research networks as it leverages a centralized data exchange approach; partners contribute data to a single, secure data warehouse managed by the OneFlorida Coordinating Center (OFCC) at the University of Florida.

Officials noted that the organization took a centralized approach to the OneFlorida model to support the inclusion of data from nonacademic community health systems and safety net providers.

“Our key motivation for this approach was cost-effectiveness and efficiency of the network: many OneFlorida partners did not have existing research infrastructure on which to build an independent PCORnet data mart,” they wrote. “Nor were they as experienced with the core data standards used such as LOINC, RxNorm, and the PCORnet Common Data Model (CDM).”

“OneFlorida is committed to the inclusion of safety net providers, such as FQHCs,” the study authors continued. “These entities serve unique populations that typically experience gross health inequities. By ensuring their inclusion, we ensure that data used for research and for example, construction of artificial intelligence models, are less biased and do not help to perpetuate health inequities.”

Engaging safety-net providers in prospective trials helps to directly reduce disparities in research results generated in OneFlorida, the study authors emphasized.

Since its inception, the database has housed complete, statewide Medicaid data through a partnership with the Florida Agency for Healthcare Administration (AHCA). OneFlorida subsequently added Medicare data for the dual-eligible population.

Initially, OneFlorida deployed its in-house privacy-preserving entity resolution (PPER) solution—OneFl Deduper—across all OneFlorida partners for record linkage.  

In late 2019, PCORnet selected a commercial PPER solution from Datavant as a common health IT tool to be used across the network. OneFlorida is currently in the process of implementing the Datavant at all partners.

As of April 2021, OneFlorida deduplicated 2.4 million patient records for 2.2 million patients and linked 1.7 million patient EHR records (10 percent of its total data stores) to claims data. Overall, nine million patients have claims data and 9.9 million have EHR data.

OneFlorida has taken several measures to ensure high quality data, including the PCORnet empirical data characterization (EDC) process which mandates a quarterly refresh of all EHR data.

“EDC includes mandatory checks for certification for use in PCORnet studies and also flags serious issues,” the authors wrote. “Despite the Data Trust being centralized, PCORnet treats each OneFlorida source (including Medicaid) as a separate PCORnet data mart, each of which must pass EDC on its own. OFCC staff perform EDC for each data mart and work with partners to address issues identified.”

Several retrospective studies have utilized the database, including research on hypertension, obesity, sickle cell disease, stillbirth, hepatitis C, opioid use disorder, and adults with multiple chronic conditions.

To bolster further research, OneFlorida expanded to OneFlorida+ in 2020 with the additions of Emory University in Georgia and the University of Alabama at Birmingham.

“The result is an expansion of the network and research infrastructure from Florida to the southeastern United States,” the authors noted. “The vision is to address the health needs and health disparities of the entire expanded region.”

Currently, OneFlorida is in discussion with stakeholders on potentially linking the Data Trust to additional statewide datasets, such as the Florida immunization registry and emergency medical services data.