The OneFlorida Clinical Research Consortium CRN is a partnership of 11 health systems based out of academic health centers and community health systems and clinics in the state of Florida, led by University of Florida Health. OneFlorida’s partners conduct a variety of patient-centered outcomes research in the forms of pragmatic clinical trials, health services research, implementation science studies, and observational research.
This diverse approach aims to improve health care and outcomes for all Floridians while engaging a diverse set of stakeholders in numerous health delivery settings. The network is advancing more complete and comprehensive data sets for research by linking clinical data from its participating sites to complementary data sources via a partnership with the Florida Agency for Health Care Administration, which manages the state’s Medicaid program, and by linking with the Centers for Medicare & Medicaid Services for Medicare claims data. This data linkage provides a more complete picture of patients’ healthcare experience and is essential for providing the necessary depth of data for real-world evidence studies.
To maximize research opportunities, OneFlorida actively engages with a multitude of different stakeholders, including patients, clinicians, health systems, payers, policymakers, and community members. The network is committed to maintaining key partnerships and employs multiple communication strategies that are uniquely structured for each stakeholder group. To uphold OneFlorida’s patient-centric model, patient engagement is a network priority. This engagement includes community members and patients assisting in strategic planning, providing research recommendations, and engaging as research partners through the OneFlorida Advisory Committee, the Citizen Scientist Program, and programs that provide general outreach and promote research opportunities to the community.
OneFlorida also engages health system leaders (chief executive officers, chief operating officers, and chief medical officers) through annual meetings and individual in-person meetings throughout the year. Clinicians are engaged through its Study Development Program using clinical champions who are recognized physician leaders throughout the state. Clinicians participating in OneFlorida studies also have access to the OneFlorida Maintenance of Certificate program, which provides training in quality improvement (QI) and selected QI initiatives and training in data collection, analysis, and reflection.
OneFlorida is managed by the Executive Committee (EC), which consists of OneFlorida’s principal investigator (PI), site-level PIs, and one patient stakeholder. The EC votes on network policies, proposed studies, and any changes to the network’s infrastructure. The EC is advised by four sub-bodies including:
The Data Trust, a central body of biomedical informaticians and healthcare delivery researchers that manages OneFlorida’s centralized data trust and harmonizes the data from the clinical partners to the PCORnet CDM
The Study Development Program, consisting of investigators, clinicians, and patient representatives who engage investigators and clinicians at partner sites to participate in network research projects
The Clinical Research Program, consisting of senior researchers and patient representatives who provide insight and expertise into specific areas of research such as cardiovascular disease, cancer, infectious diseases, and neurological disorders
The Community and Citizen Scientist Program, consisting of patients and other stakeholders who are charged with created equitable partnerships throughout the entire research process
PCORnet is intended to serve as a national resource for conducting rapid, efficient, patient-centered observational and interventional randomized research that improves healthcare delivery and health outcomes. Over the course of this project period OneFlorida will enhance and optimize its infrastructure to support a variety of patient-centered studies by:
Ensuring meaningful engagement of patients, caregivers, clinicians, delivery systems, payers, and researchers, in all phases of the research process
Operating through a network model in which data remains at the source while allowing approved researchers within and outside the network to access it securely through a central point
Facilitating the public sharing of resources and reusable tools to make research more efficient and reproducible
Using the PCORnet CDM, which standardizes the data collected when patients receive care so that it is comparable across health systems and can be used for patient-centered outcomes research
Using streamlined processes such as one central IRB for studies involving multiple systems and standardized data use agreements to enable research to be quicker and more efficient
The OneFlorida Clinical Research Consortium
Clinical Research Network
University of Florida – UF Health
Bond Community Health Center Inc.
Florida State University
Nicklaus Children’s Hospital
Orlando Health System
Tallahassee Memorial Healthcare
University of Miami and UHealth
The University of South Florida Tampa General Hospital
PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships. Clinical Research Networks (CRNs) are one type of network supported by PCORI. CRNs consist of two or more healthcare systems, including hospitals, integrated delivery systems, and federally qualified health centers. Each CRN transforms data gathered from routine patient care across its participating health systems to a consistent format, the Common Data Model (CDM), to enable rapid response to research-related questions.
This study received additional funding in 2020 to quickly initiate new research related to COVID-19. The additional research is in progress. PCORI will post the research findings on this page once the results are final.
Recent data suggests the development of coagulopathy as a result of the inflammatory response to SARS-CoV-2 infection is associated with poorer outcomes in patients with COVID-19. The enhancement to this project utilizes the PCORnet Distributed Research Network Operations Center, vanguard Clinical Research Network (CRN) sites, and the PCORnet COVID-19 Common Data Model (CDM) to optimize and validate key COVID-19 data elements related to the treatment and outcomes associated with COVID-19 coagulopathy. This initial work will help to inform future work to better understand the prevalence and role of coagulopathy in COVID-19 and potential treatment options.
In the enhancement:
Vanguard CRN slides will load priority data elements into their PCORnet COVID-19 CDM
PCORnet COVID-19 CDMs at participating sites will be assessed for research readiness
Priority data elements will be validated by the CRNs through provenance surveys
Coordinating Center and CRNs will perform limited validations of case definitions and derived data elements