The OneFlorida Clinical Research Consortium received funding from the Patient-Centered Outcomes Research Institute (PCORI) to collaborate on three projects that seek to address a variety of pressing concerns among health systems leaders.
The projects aim to impact the quality of care that patients receive and will be led by three different Clinical Data Research Networks, or CDRNs, which bring together health systems, patients, clinicians, researchers and others to develop data infrastructure that supports patient-centered research. Together, they are part of a national research data network called PCORnet, funded by PCORI.
The projects include:
- Automating Quality and Safety Benchmarking for Children: Meeting the Needs of Health Systems and Patients – led by Kathleen Walsh, M.D., of Cincinnati Children’s Hospital Medical Center, a network member of PEDSnet.
- Identifying and Predicting Patients with Preventable High Utilization – led by Rainu Kaushal, M.D., M.P.H., Chair of Healthcare Policy & Research at Weill Cornell Medicine, a network member of the New York City CDRN.
- The Impact of Patient Complexity on Healthcare Utilizations – led by Scott Fields, M.D., MHA, Chief Medical Officer of the Oregon Community Health Information Network, a network member of the ADVANCE CDRN.
“The OneFlorida Clinical Research Consortium is excited to participate in these three important projects, which aim to serve our health system partners and provide better care for patients nationwide,” said Betsy Shenkman, Ph.D., Co-Director of the OneFlorida Clinical Research Consortium, who will serve as the site principal investigator on the three projects.
OneFlorida partners who will participate in these projects as part of the OneFlorida Data Trust include UF Health, Orlando Health, Tallahassee Memorial Hospital, Health Choice Network and Florida Hospital. The OneFlorida Data Trust also houses Florida Medicaid Pediatric Claims Data.
Learn more about each project below.
Automating Quality and Safety Benchmarking for Children: Meeting the Needs of Health Systems and Patients
PEDSnet and the OneFlorida Clinical Research Consortium will collaborate to implement and test electronic measures of outpatient pediatric health care quality and safety, so health care systems can compare their performance to others and thereby learn from one another and improve.
Together, PEDSnet and the OneFlorida Clinical Research Consortium have 7.9 million children in their networks. The research team will use the Common Data Model Version 3 and examine three well-established measures of quality in pediatric outpatient care:
- Transcranial Doppler (TCD) screening for children with sickle cell disease
- Appropriate antibiotics for ear infections
- Cholesterol and glucose testing for children on antipsychotic medications
These measures are important because they highlight the gap between what is known to be best practice and what actually occurs in routine care. For example, approximately 100,000 Americans have sickle cell disease; however, only 30 percent of children receive screening, which identifies high risk for stroke and initiates treatments that reduce risk by 92 percent.
Only 70 percent of children with ear infections receive the appropriate antibiotics. Finally, more than 600,000 children take antipsychotic medications, which greatly increase the risk for diabetes and high cholesterol, but only 19 percent receive glucose and cholesterol tests.
The research team will test the creation of a benchmarking report so health systems can compare their performance to others on these measures. Without this information, hospitals do not know if they have the best quality care or the worst and cannot learn from each other, which limits improvement. In the team’s interviews, health system leaders expressed a critical need for this type of electronic quality measures for benchmarking.
Like PEDSnet, researchers in the OneFlorida Clinical Research Consortium bring years of experience in developing and validating quality measures with large diverse populations and will collaborate on this project with five of its large pediatric sites through the OneFlorida Data Trust and extensive stakeholder engagement. The OneFlorida partners involved in the project, for which PCORI allocated $670,898, include the University of Florida, UF Health Children’s Hospital, Arnold Palmer Hospital for Children (as part of Orlando Health), Nicklaus Children’s Hospital and Florida Hospital for Children.
The research team will be led by Kathleen Walsh, M.D., M.Sc., Director of Safety and Research at Cincinnati Children’s Hospital, a member of PEDSnet, and will include OneFlorida researcher Betsy Shenkman, Ph.D., Chair of the Department of Health Outcomes and Policy at the University of Florida, director of the Institute for Child Health Policy at the University of Florida and co-PI of the OneFlorida Data Trust, the consortium’s CDRN and Jennifer McCafferty, Ph.D., Director of the Miami Children’s Research Institute and Office of Sponsored Programs at Nicklaus Children’s Hospital, part of Miami Children’s Health System, one of the pediatric leaders within the consortium.
Identifying and Predicting Patients with Preventable High Utilization
The OneFlorida Clinical Research Consortium is one of three CDRNs collaborating on this project, which focuses on high health care use, with the New York City Clinical Data Research Network (NYC-CDRN), the lead CDRN, and the Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN). The health and health care for some of patients with preventable high health care use can be improved if they are identified early and provided targeted help.
For example, a given patient may benefit from transportation assistance while another may benefit from coordination of multiple prescriptions. Health systems and clinicians often do not have full information on the conditions or needs of their patients and therefore do not know which patients would benefit most from assistance. They are also unable to predict which patients will become high users of health care in the future.
During the project planning phase, health system leaders and patients, including 60 executives and 22 patients from the 20 health systems participating in this project, prioritized the topic of patients with high health care use. They described the need for better information and tools to help them identify and predict which patients could benefit from an intervention. CDRNs are well placed to help health systems improve health care delivery given their expertise and experience preparing complete sets of data on patients from multiple sources. The CDRNs will create, in collaboration with patients and health systems, data sets and tools to identify and predict patients with current or future preventable high health care use, using information from a variety of sources, including patients’ medical records, health plans’ records, census surveys and neighborhood surveys.
The OneFlorida Clinical Research Consortium will engage its Data Trust partners to conduct this research and will provide data linkage expertise as well as a long history of conducting research among populations with high health care usage.
The research team will be led by NYC-CDRN Principal Investigator Rainu Kaushal, M.D., M.P.H., chair of healthcare policy & research, Nanette Laitman Distinguished Professor of Healthcare Policy & Research at Weill Cornell Medicine and chief of healthcare policy & research at NewYork-Presbyterian Hospital/Weill Cornell Medical Center. The team will also include OneFlorida researchers Betsy Shenkman, Ph.D., chair of the department of health outcomes and policy at the University of Florida, and Sanjay Ranka, Ph.D., professor of computer and information sciences at the University of Florida.
PCORI allocated $1,198,793 for this project.
The Impact of Patient Complexity on Healthcare Performance
Since vulnerable populations have traditionally been left out of health care research, many interventions, health care systems and health care policies do not adequately account for the complexities, challenges and needs of patients who are low-income, racial/ethnic minorities and/or adversely impacted by social determinants of health. The Accelerating Data Value Across a Community Health Center Network, or ADVANCE, Clinical Data Research Network, based in Oregon, will partner with the OneFlorida Clinical Research Consortium to examine how factors, such as where patients live, how much money they have and whether or not they graduated from high school, affect how patients use health care services and how healthy they are.
For instance, the study will explore whether being diagnosed with multiple conditions like physical and mental health issues means that patients, and the health systems that serve them, have poorer outcomes. The project will utilize a variety of existing data, such as Medicaid insurance claims, patient record data and data about the communities where patients live to ultimately inform more effective and holistic patient care.
The project specifically addresses ADVANCE health system leaders’ concerns regarding measuring the performance of providers and health systems who serve different patient populations and properly accounting for patient complexity in those measurements. Similarly, health systems leaders in Florida prioritized understanding whether patients with both physical and mental health conditions receive appropriate mental health services and the recommended care for their chronic conditions.
The research team will be led by Scott Fields, M.D., chief medical officer at OCHIN, the lead organization for the ADVANCE CDRN. The research team from the OneFlorida Clinical Research Consortium includes Dean Watson, M.D., of Tallahassee Memorial Hospital and the OneFlorida Steering Committee, as the health systems leader Co-PI; Elizabeth Shenkman, Ph.D., co-director of the OneFlorida Clinical Research Consortium; William Hogan, M.D., M.S., co-director of the OneFlorida Data Trust; and Yi Guo, Ph.D., of the University of Florida.
The OneFlorida Clinical Research Consortium will specifically contribute expertise in linking health care data with social determinants data, a history of working to improve health care for those with both mental and physical illnesses and expertise in working with Medicaid data. In addition, the immense diversity among patients in the OneFlorida Data Trust offers a unique data set for discovering insights into how patients’ life circumstances impact the likelihood of receiving routine care and preventing unnecessary health care utilization.
PCORI allocated $985,686 for this project.
“These projects will advance the scope of research PCORI is doing to address the needs of all our stakeholders, including health plans and health systems, as well as patients,” said PCORI Executive Director Joe Selby, M.D., MPH. “With these demonstration projects, we’re supporting improved decision-making and learning by health systems, care providers, patients and families.”
All PCORI awards will be approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct comparative clinical effectiveness research efficiently by creating a large, highly representative network for conducting clinical outcomes research that directly involves patients in the development and execution of the research. More information is available at www.pcornet.org.
About Nicklaus Children’s Hospital, Where Children Matter Most (2024)
Founded in 1950 by Variety Clubs International, Nicklaus Children’s Hospital is South
Florida’s only licensed specialty hospital exclusively for children, with approximately
850 attending physicians, including more than 500 pediatric subspecialists. The 307-bed
hospital, known as Miami Children’s Hospital from 1983 through 2014, is renowned for
excellence in all aspects of pediatric medicine with many specialty programs
routinely ranked among the best in the nation by U.S. News & World Report since 2008. The
hospital is also home to the largest pediatric teaching program in the southeastern
United States and since 2003 has been designated an American Nurses Credentialing
Center (ANCC) Magnet facility, the nursing profession’s most prestigious institutional
honor. For more information, please