2017 Annual Stakeholder Meeting Highlights
More than 200 researchers, clinicians and other stakeholders from across the state convened for the OneFlorida Clinical Research Consortium’s third Annual Stakeholder Meeting on January 26 at the University of Florida’s College of Medicine in Gainesville. Partners gathered to focus on developing the research infrastructure required to address today’s complex health care needs, and to continue building and improving access to the consortium’s Practice-Based Research Network and OneFlorida Data Trust.
Among the roster of attendees were Celeste Philip, M.D., MPH, interim surgeon general and secretary for the Florida Department of Health, and keynote speaker Joe Selby, M.D., MPH, executive director of the Patient-Centered Outcomes Research Institute (PCORI) in Washington, D.C.
In his introductory remarks, David Nelson, M.D., director of the University of Florida Clinical and Translational Science Institute (UF CTSI), co-chair of the OneFlorida Steering Committee and a member of the OneFlorida Executive Committee, credited the stakeholders and consortium partners with successfully collaborating to develop a 10-million patient infrastructure that promises to streamline clinical research and improve health outcomes for patients in Florida and nationwide.
In his keynote address, “Building Clinical Infrastructure,” PCORI Executive Director Joe Selby said that the current clinical research system is too slow, too expensive, and doesn’t answer questions that matter most to patients.
“Patients have unique perspectives that can change and improve the questions researchers ask in scientific studies,” he said.
Selby added that PCORnet’s 13 national clinical data research networks (CDRNs) and 20 patient-powered research networks (PPRNs) also would provide crucial evidence needed to support the kinds of clinical decisions that doctors and patients make every day. For instance, although recommending a daily aspirin to prevent heart attacks in at-risk patients is a widely accepted clinical practice, no studies have addressed the issue of optimal dosage. However, the PCORI-funded ADAPTABLE study, a national pragmatic randomized trial involving 20,000 patients, focuses on answering this question. ADAPTABLE is one of the first PCORI-funded studies to use the OneFlorida infrastructure and data.
Other PCORI-funded studies now underway at the OneFlorida Clinical Research Consortium include: (1) the INVESTED study, which examines the role of high-dose influenza vaccine in reducing cardiovascular events; (2) the Bariatric Surgery Study, which compares the risks, benefits and outcomes of three common methods of bariatric surgery; and (3) the Antibiotic Use in Infants and Obesity Study, which examines the use of antibiotics during a child’s first two years of life and obesity in the later years.
Bill Hogan, M.D., M.S., co-director of the OneFlorida CDRN and director of biomedical informatics at the UF CTSI, reported that the OneFlorida Data Trust reached several major milestones in 2016. The first occurred when PCORI certified the Data Trust to be ‘research ready’ in August 2016. In late fall, the OneFlorida Data Trust surpassed 10 million patients represented in the data. Already, 27 studies have been approved to use the consortium network and data by the OneFlorida executive committee and another 21 studies are pending approval.
“OneFlorida’s vision of creating a collaborative network of research partners and a vast research database that reflects the diversity of Florida’s patient population has now become a reality,” said Betsy Shenkman, Ph.D., professor and chair of UF’s Department of Health Outcomes & Policy, director of UF’s Institute for Child Health Policy, co-director of the UF CTSI and director of the OneFlorida Clinical Research Consortium. “In the coming year, we will continue to strengthen and expand our partnerships and to enhance the data in the OneFlorida Data Trust,” she said. Plans are underway to incorporate more in-depth information focused on specific diseases and populations, including pediatrics, heart health, liver disease, renal disease and cancer.
During the OneFlorida Projects Panel, members of the OneFlorida Patient Population Workgroups, Health Systems Demonstration Projects, the OneFlorida Cancer Control Alliance and the newly formed OneFlorida Child Health Alliance reported on their progress during the past year and plans for the future, including:
- The development of two computable phenotypes for hypertension, one of which was shared with other CDRNs in PCORnet.
- Advances in using the Common Data Model (CDM) and electronic health records to design comparative obesity research, and the development of a OneFlorida Obesity Report Card to gauge obesity rates throughout the state and help focus resources and interventions.
- Research to find a computable phenotype and a biomarker for Duchenne muscular dystrophy, and plans to address long-term health concerns among children who have DMD, such as bone health and fractures resulting from medication use.
- The use of technology to educate patients about immunizations, monitor chronic conditions in the comfort of a patient’s home, and screen for risk-taking behaviors in children and adolescents.
Small group work sessions for cancer, children’s health, heart health, quality/learning health systems, and infectious disease met during the afternoon to discuss the kinds of data each group would like to have available for research that is currently not captured by the Common Data Model.
“As we consider all of the challenges and stresses of where we want the consortium to go, we must keep in mind how remarkable it is that these partners came together across the state before we had funding to commit to developing a clinical trails infrastructure to improve the health of Florida citizens,”
Nelson said. “We are all committed to that goal and we have to pat ourselves on the back because that is a lofty goal.”
Hogan said that at every level, this year’s stakeholder meeting was a tremendous success.
“The visibility and reputation of OneFlorida at home, across the state, at PCORI, and across the nation took a big leap forward,” he said.