The OneFlorida+ Network. OneFlorida+ includes 10 health system and clinical partners in Florida and also metropolitan sites in Atlanta, Georgia and Birmingham, Alabama. The University of Florida (UF) serves as the coordinating center. Participants in the OneFlorida+ of today look like the United States of tomorrow: older and more diverse in race, ethnicity, and socioeconomic vulnerability. Ongoing demographic transformations will make the United States of 2030 look like current network participants. By 2030, people 65 and older are expected to outnumber children for the first time in US history. Florida leads the way with 21 percent of the population 65 or older in 2020, with an increase to 30 percent expected in the next 10 years. The US population percentage of Non-Hispanic White (NHW) will continue to shrink. OneFlorida+ currently reflects the shift with NHWs comprising 45 percent of the network’s patient population in Florida, 43 percent in Georgia, and 59 percent in Alabama. The network’s diverse health settings include academic health centers, statewide and regional health systems, federally qualified health centers, and safety-net behavioral health providers. With 16.8 million patients in Florida, 2.1 million patients in Georgia, and 9,100 patients in Alabama (19.9 million total), OneFlorida+ will contribute uniquely to PCORnet® 3.0, with strengths in the diversity of patient populations and settings.
Mission. Within the context of diverse participants and settings, OneFlorida+ maintains and improves a strong research infrastructure that contributes to PCORnet as a partner and leader of innovative national patient-centered research. The team accomplishes the mission through (a) sharing governance and engagement with patients, clinicians, health system leaders, payers, researchers, and policy makers; (b) maintaining and advancing the PCORnet common data model; (c) pioneering new techniques to extract clinical information from doctors’ and nurses’ notes about patients; (d) forming research teams including patients and other stakeholders; and (e) reaching out to the community and scientists to share resources and information.
Importance to Patients. OneFlorida+ matters to patients because it advances patient-centered research. OneFlorida+ shares governance with patients, as well as clinicians, healthcare system leaders, researchers, and state agency directors. Patients are leaders and members of the executive committee (the main governing body) and its four programs (Data Trust, Clinical Research, Patient and Stakeholder Engagement, and Outreach and Dissemination). A member of the OneFlorida+ Citizen Scientist Program co-chairs the executive committee. Patients named, developed, and are members of the Citizen Scientist Program. The name reflects the fact that patients are partners in research. Since 2015, OneFlorida+ has participated in 23 PCORnet studies. Citizen Scientists played key roles on national committees for each and every study. OneFlorida+ also works with HealthStreet, a community health-worker-led engagement program that builds community trust in research. Further, UF has a County Extension Program, a particularly trusted resource in rural areas, which provides outreach and education for community members in every Florida county. To ensure strong multi-stakeholder partnerships, OneFlorida+ holds Design Studios where patients, Citizen Scientists, researchers, clinicians, and health system leaders come together to talk about research topics, review and plan studies, and develop plans for sharing study findings. In addition, OneFlorida+ leads a Learning Health System Committee, with representation from patients and other stakeholders to translate evidence-based findings into clinical practice.
A key component within OneFlorida+ is the Data Trust, a centralized data store currently containing electronic health record data for 16.8 million Floridians linked to healthcare claims, geographic location information, mother-baby information about birth, and tumor registry data. OneFlorida+ has experts in natural language processing, who used technology at the University of Florida (GatorTron™) to more efficiently use doctors’, nurses’, and other clinical notes to understand and identify critical clinical concepts, such as disease states and social determinants of health that can be used in future patient-centered research.
Patients and other stakeholders contribute to the success of PCORnet by collaborating with the network to engage the diverse populations and clinical settings provided by OneFlorida+, which looks like the United States of 2030. They contribute by working with the PCORnet Front Door and the nine clinical research network sites to participate as leaders, recommend study topics, partner with research teams, and participate in outreach to the community and in the sharing of research results.