OneFlorida Second Annual Stakeholder Meeting Recap
On January 20, partners from across the state convened for the OneFlorida Clinical Research Consortium’s second Annual Stakeholder Meeting in Lake Nona, where attendees celebrated the consortium’s accomplishments and strategized future collaborations.
At the meeting, Bill Hogan, M.D., co-director of the OneFlorida CDRN and director of biomedical informatics at the University of Florida Clinical and Translational Science Institute, presented one of the consortium’s most notable successes of 2015 — the further development of the OneFlorida Clinical Data Research Network, which received a $7.6 million funding award from the Patient-Centered Outcomes Research Institute (PCORI) in August. Over the past year, three years of Florida Medicaid data were converted to the PCORI Common Data Model and added to the OneFlorida Data Trust, providing health information from 3 million patients and encompassing more than 88 million encounters, 128 million diagnoses, 128 million procedures, and 57 million dispensed medications for research conducted across the state.
“Right now our main priority is integrating partner data into the Data Trust,” said Hogan. “And once we configure the PCORnet query tool, we’ll really be able to leverage the power of all this data to conduct research that improves health care Florida.”
In anticipation of the Data Trust’s completion, cohorts aligned with PCORI’s CDRN research objectives met during the second half of the day to discuss the computable phenotypes within each of their realms of expertise – obesity, Duchenne muscular dystrophy, and hypertension – and to prepare for the next steps in their research agendas. To supplement the discussion, members from DuchenneConnect were in attendance to add further insight to OneFlorida’s rare disease focus. In addition to tackling their own research endeavors, these cohorts will be used to create national collaborations with outside institutions and facilitate additional PCORnet studies at other CDRN sites.
“OneFlorida has successfully brought together leading researchers throughout our state and nation to improve health outcomes not only in Florida, but also across the U.S.,” said Betsy Shenkman, Ph.D., co-director of the OneFlorida Clinical Data Research Network and co-director of the University of Florida Clinical and Translational Science Institute. “The variety of multidisciplinary backgrounds and specialties we’ve already connected and will continue to connect gives us a remarkable opportunity to conduct patient-centered comparative effectiveness research and develop best practices moving forward.”
To supplement the scientific process, the OneFlorida Clinical Research Consortium has allied itself with a network of community members through the Citizen Scientist Program. The program, based at the University of Florida Clinical and Translational Science Institute, is comprised of 11 individuals ranging in age from early 20s to mid-80s and serves as a model for other organizations and institutions looking to elicit the insight from those on the receiving end of health care. The group plays an increasingly active role in all stages of the OneFlorida research process, from study design to interpretation of findings.
“Sometimes physicians and researchers miss observations about health care that may seem obvious to someone with an outside perspective,” said Albert Wu, M.D., director of the Center for Health Services and Outcomes Research at the John Hopkins Bloomberg School of Public Health, scientific advisor to the OneFlorida Clinical Research Consortium and the meeting’s keynote speaker. “These citizen scientists in particular are fully integrated into the consortium’s infrastructure and play a crucial role in patient-centered, comparative-effectiveness research.”
Moving forward, the OneFlorida Clinical Research Consortium plans to bring its patient-engaged and data-driven research to three additional PCORnet research studies: “ADAPTABLE Trial of Aspirin Dosing,” which examines whether regular-strength or “baby” aspirin is more effective at preventing a heart attack or stroke in people with heart disease; “Outcomes of Weight Control Survey,” which will analyze the three common types of bariatric surgery to compare patients’ weight loss and regain, rate of diabetes, improvement, relapse, and more; and “Effects of Antibiotics on Weight Gain in Young Children,” which will identify the effects of alternative antibiotics used during the first two years of life on body mass index and risks of being overweight or obese during children’s third to fifth years of life.
“The past year’s collaborations and successes have stemmed directly from the shared dedication and vision of the OneFlorida partners, and they’re poised to continue this momentum through the coming years,” said Peter Embi, M.D., vice chair in the Department of Biomedical Informatics at the Ohio State University and scientific advisor to the OneFlorida Clinical Research Consortium. “Their current progress represents only a fraction of their full potential, and with continued work and perseverance, I believe they can reshape how the state conducts health research.”
A link to the meeting report can be found here: 2016 Annual Stakeholder Meeting Report.