PHILADELPHIA – A large-scale research project on governance structures of Learning Health Systems (LHSs), led by Steven Joffe, MD, MPH, Emanuel and Robert Hart Associate Professor andvice chair of Medical Ethics and Health Policy at the Perelman School of Medicine at the University of Pennsylvania, has been awarded a three-year, $1 million funding award from the Patient-Centered Outcomes Research Institute (PCORI). Learning Health Systems aim to convert health data from patients into actionable findings that improve health care delivery. Results of the study will be critical in the development of guidelines for research that protect and respect patients and research participants while also contributing important knowledge in a transparent, patient-centered and patient-engaged way.
Steven Joffe, MD, MPH
The Learning Health System concept emerged in National Academy of Sciences white papers a decade ago when roughly 10 percent of U.S. hospital systems had fully integrated electronic records systems. The central idea behind the LHS, Joffe says, is that all the electronically recorded patient data and claims records of a hospital would become part of an ongoing feedback loop in which scientific evidence informed clinical practice while data gathering from clinical practice informed scientific investigation. In addition, LHSs strive to build quality improvement activities and experimental studies into as many facets of their operations as possible. But, before the benefits of this approach can be realized, the researchers say it’s imperative that the governance models that support such systematic learning be more clearly defined.
“Understanding how these relatively new systems are governed is a key component to the success of patient-centered outcomes research, yet we know little about how existing LHSs conceptualize or design governance structures, how they integrate them across the organization, where they place them in the organizations’ leadership chart, or how they partner with patients and community members in meaningful and effective ways,” said Joffe.
The new project will be carried out in two phases. The first phase will involve interviews with LHS leaders to gather information about current governance structures and system design. Based on those results, the project leaders will then conduct focus groups with patients and family members who receive care in in the LHSs involved in the first phase.
Joffe’s award has been approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.
PCORI is an independent, nonprofit 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 healthcare decisions. For more information about PCORI’s funding, visit www.pcori.org.
Penn Medicine is one of the world’s leading academic medical centers, dedicated to the related missions of medical education, biomedical research, excellence in patient care, and community service. The organization consists of the University of Pennsylvania Health System and Penn’s Raymond and Ruth Perelman School of Medicine, founded in 1765 as the nation’s first medical school.
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