Florida is the third most populous and one of the most diverse states in terms of race/ethnicity, age, health status, and geography. OneFlorida was created in 2009 by aligning diverse partners including patients, clinicians, health systems, researchers, payers of third-party claims, and state agencies in Florida. It provides an enduring infrastructure for comparative effectiveness research. OneFlorida includes 9 unique clinical systems that in 2014 provided care for approximately 9.7 million (48 percent) of all Floridians through 4,100 physicians, 914 clinical practices, and 22 hospitals. OneFlorida partners with two PPRNs: DuchenneConnect and Phelan-McDermid Syndrome Data Network. The Clinical and Translational Science Institute partners are the University of Florida and the University of Miami.
OneFlorida’s Steering Committee, Programs, and Teams are jointly governed by patients, researchers, and clinicians to ensure that studies are patient-centered, sensitive to clinician workflow, and scientifically sound. The geographic coverage, the heterogeneity of patients, the diverse clinical and community settings, our novel programs, and our extensive healthcare claims data and experience distinguish OneFlorida as offering unique capabilities and opportunities for PCORnet.
The OneFlorida Data Trust is a secure data repository containing 952,493 unduplicated patients with 3 years of linked electronic health record (EHR) and Medicaid data. During the first 6 months of the clinical data research network, an additional 910,990 patients will be added, fully meeting the goal of a complete, longitudinal data set for over 1 million patients. The Data Trust houses Medicaid and Medicare data, and we are adding limited data sets from EHRs of other clinical partners. These data are available for cohort discovery and observational studies. Over the next 2 years, 9.8 million total patients will be in the OneFlorida Data Trust. The Data Trust Team has extensive experience linking claims, patient-reported outcome, and EHR data. OneFlorida has 1.9 million patients with hypertension, 1.8 million adults and approximately 680,000 children who are obese, and 311 boys with DMD—our key disease areas.
OneFlorida clinical trial infrastructure includes a single Institutional Review Board for study approval and software to obtain electronic informed consent. Our infrastructure also supports embedding clinical trials within the health systems and practices and recognizes that proposed studies must be patient sensitive and clinically feasible. OneFlorida studies are supported through a strong governance structure, informatics tools, clinical champions, and clinical practice facilitators. OneFlorida is applying integrated, multiple communication strategies to engage patients, clinicians, and health system leaders. For each stakeholder group, the messages are customized, with increasing levels of individual contact and engagement. OneFlorida partners with national networks addressing cardiovascular disease, DMD, substance use disorders, HIV, and integrated physical and oral health.
View more about this project on PCORnet.org.