Project Summary
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.
MMM-IDD Capacity Building Project
Summary
This project received additional funding in 2022 to support infrastructure capacity building to facilitate patient-centered outcomes research aligned with two PCORI priority research areas: Maternal Morbidity and Mortality (MMM) and Intellectual and Developmental Disabilities (IDD).
PCORI funds patient-centered outcomes research (PCOR), a type of comparative clinical effectiveness research (CER) that focuses on outcomes that matter to patients, their caregivers, and their families. As part of PCORI’s reauthorization in December of 2019, Congress included two new research priority areas: maternal morbidity and mortality (MMM) and individuals with intellectual and developmental disabilities (IDD).
The goal of this project is to strengthen the capacity of PCORnet®, the National Patient-Centered Clinical Research Network’s infrastructure to facilitate PCOR focused on these two priority areas by:
- Developing MMM and IDD research agendas focused on CER questions which the PCORnet® infrastructure and resources are well- suited to address,
- Identifying national experts in IDD and MMM who are affiliated with PCORnet partner organizations to inform understanding of PCORnet strengths and potential limitations to address PCORI’s strategic priorities, and
- Identifying potential gaps in existing PCORnet capacity (e.g., data resources) needed to address high-priority IDD/MMM PCOR questions.
Enhancement Award Amount: $83,401
PCORnet® Expansion
This project received additional funding in 2023 to expand participation in PCORnet® with the aim of achieving a network representing the full diversity of the general US population. The PCORnet® Expansion initiative aligns with the Strategies to Leverage PCORnet to Advance PCORI’s National Priorities for Health and Evaluate PCORnet Performance approved by PCORI’s Board of Governors in September 2022.
PCORI funds patient-centered comparative clinical effectiveness research (CER) that focuses on outcomes that matter to patients, their caregivers and their families. The goal of this initiative is to strengthen the capacity of PCORnet to facilitate CER by accelerating participation of diverse, underrepresented and underserved populations in PCORnet® Studies, network governance and operations. The funding will support expansion of the OneFlorida+ Clinical Research Network (CRN) by developing and implementing operational, data, research and engagement infrastructure at Jackson Health System, the University of California, Irvine Health System and the University of Arkansas Medical Sciences Health System (UAMS Health).
Jackson Health System is a safety-net provider in South Florida and serves large Hispanic/Latino patient populations.
University of California, Irvine Health System expands the geographic reach of the OneFlorida+ CRN across Southern California. The system serves large Asian and Hispanic/Latino patient populations.
UAMS Health expands the geographic reach of OneFlorida+ CRN across Arkansas. UAMS also serves a unique patient population including Native Hawaiian and other Pacific Islander patients, as well as people from the Marshall Islands.
Enhancement Award Amount: $469,827
Project Information
Key Dates
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.