PCORI Approves OneFlorida Clinical Data Network for Research
The OneFlorida Clinical Data Research Network is officially “Approved for Research,” after a rigorous review and data characterization cycle by PCORnet, the Patient-Centered Outcomes Research Institute’s national research data network.
With this status, the OneFlorida Clinical Research Consortium is now eligible for additional funding and to participate in studies through PCORnet. In addition, it enables Floridians to engage in national research studies that they previously would not have had access to and on a much larger scale than before, which could ultimately impact the health of the state’s communities.
The OneFlorida Data Trust, which serves as the statewide data repository for the OneFlorida Clinical Data Research Network (CDRN), currently includes the de-identified data of more than 8.2 million Floridians from UF Health in Gainesville and Jacksonville, Tallahassee Memorial Healthcare, Orlando Health, Health Choice Network, Florida Medicaid and Florida Hospital. The Data Trust will allow researchers nationwide to conduct studies on de-identified patient data to identify trends and procedures that improve individuals’ health as well as contact patients who have consented for engaging in research that could improve their health.
In order to be approved, the OneFlorida Data Trust completed multiple rounds of audits from PCORnet that examined how uniform the data is, its quality and any issues in procuring results from inquiries. The audit is essential for ensuring that research conducted with this data produces accurate results.
“This incredible accomplishment was only possible due to the hard work and perseverance of multiple partners across this network,” said Bill Hogan, M.D., M.S., co-principal investigator of the OneFlorida Clinical Data Research Network and director of biomedical informatics at the University of Florida Clinical and Translational Science Institute. “I would especially like to acknowledge the leadership of many individuals across the state who believed that a centralized data repository was not only possible but also vital for speeding data-driven research insights to the patients who need them.”
Since the OneFlorida Clinical Research Consortium has a centralized data warehouse or data mart, with the health systems and Medicaid data located together, it only needed to get one entity approved. Most other CDRNs nationwide run federated models, where each health system’s data mart must be validated and approved separately. The OneFlorida Data Trust is one of only 23 that have reached approved for research status, out of the pool of 82 data marts nationwide.
By achieving this status, the consortium can engage in more studies on the national scale, contributing to the body of knowledge that will address some of the more pressing and perplexing health care issues facing the U.S., including chronic conditions among children, obesity, cancer and more.
“The Florida of today represents the nation of tomorrow, with its aging and more diverse population, making it an ideal venue for conducting research that will be relevant in shaping the future of health care,” said Betsy Shenkman, Ph.D., co-principal investigator of the OneFlorida Clinical Data Research Network, director of the OneFlorida Clinical Research Consortium, and chair of the department of health outcomes and policy at the University of Florida. “We are excited to collaborate with experts nationwide in bringing cutting-edge solutions to Florida’s patients and engaging populations who have been left out of traditional academic research.”
Read more about three recently approved studies that will use the OneFlorida Data Trust to improve health care systems here.
The OneFlorida Clinical Data Research Network is supported by a $7.9 million funding award from the Patient-Centered Outcomes Research Institute.
About the OneFlorida Clinical Research Consortium
The OneFlorida Clinical Research Consortium is a collaboration among researchers, clinicians and patients that aims to improve health across the state through community-based pragmatic clinical trials and implementation studies in all of Florida’s 67 counties. OneFlorida was recently designated as one of the nation’s 13 clinical data research networks (CDRN) by the Patient-Centered Outcomes Research Institute and has multiple funded initiatives at various stages of development, including the OneFlorida Cancer Control Alliance, funded by the Florida Department of Health’s James and Esther King Biomedical Research Program. Consortium partners include the University of Florida, the University of Miami, Florida State University, Orlando Health, Florida Hospital, Health Choice Network, Bond Community Health Center, Inc., Tallahassee Memorial HealthCare, Miami Children’s Health System, WellFlorida Council, Capital Health Plan, DuchenneConnect, and Phelan-McDermid Syndrome Data Network. Together, OneFlorida partners encompass more than 10 million patients or 39 percent of the patient population in the nation’s third largest state. OneFlorida envisions itself as a learning network, where research is conducted in diverse real-world settings and the lessons learned are systematically captured and translated back into improved health, health care and health policy for Floridians.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct comparative clinical effectiveness research efficiently by creating a large, highly representative network for conducting clinical outcomes research that directly involves patients in the development and execution of the research. More information is available at www.pcornet.org.