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Medical Schools, Teaching Hospitals Prepare to Conduct New PCORI Research

AAMC Reporter: May 2014

—By Alicia Gallegos, special to the Reporter

The Patient-Centered Outcomes Research Institute (PCORI) recently approved funding awards to 11 clinical data research networks (CDRNs) that will securely collect health information as part of the National Patient-Centered Clinical Research Network (PCORnet). The 11 clinical networks, eight of which are AAMC member-institutions, will study a range of conditions from cystic fibrosis to obesity to rare ailments such as Kawasaki disease, which causes heart problems in children. The new research will fuel an unprecedented hub of data collection, analysis, and discovery.

“PCORnet is paradigm shifting—the sheer number of people who will benefit from research done across the network is breathtaking,” said Ann Bonham, Ph.D., AAMC chief scientific officer. “PCORnet offers a real opportunity for ensuring that broad groups of patients and populations will be included in and benefit from comparative effective research.”

Congress authorized PCORI in 2010 to conduct comparative clinical effectiveness research (CER) that would ultimately improve health care delivery and outcomes. PCORI launched PCORnet to facilitate more efficient CER and increase the amount of health information available. The unit will foster observational and experimental CER by establishing a resource of clinical data gathered in real time and in real-world settings, such as clinics. Data collected by the networks will be stored in standardized, interoperable formats under rigorous security protocols.

In December 2013, PCORI approved $93.5 million to support 29 health data networks that will make up PCORnet, including the 11 clinical data research networks and 18 Patient-Powered Research Networks (PPRNs). Most networks finalized their funding contracts in April.

One clinical system chosen as part of PCORnet is the New York City Clinical Data Research Network (NYC-CDRN), led by Weill Cornell Medical College of Cornell University. NYC-CDRN comprises 22 organizations, including academic medical centers, regional health information organizations, and consumer advocacy groups. The network will build on six existing National Institutes of Health (NIH) clinical and translational science award centers, including those at Albert Einstein College of Medicine of Yeshiva University, Icahn School of Medicine at Mount Sinai, and NYU School of Medicine.

“This is a very exciting opportunity to further collaboration across New York City’s academic medical centers, clinical and translational science award centers, and federally qualified health centers,” said Rainu Kaushal, M.D., M.P.H., principal investigator for NYC-CDRN and director of the Center for Healthcare Informatics and Policy at Weill Cornell.

“Independently, and sometimes in pairs, we were all doing valuable patient-centered research, but the PCORnet program is a tremendous opportunity to transform our ability to do clinical research.”

All PCORnet clinical networks will study obesity as well as two other health conditions or diseases of their choosing. NYC-CDRN plans to evaluate diabetes and cystic fibrosis.

“Both [New York City] and our network participants have invested significantly in curbing [diabetes’] impact—from community-based programs to a citywide hemoglobin A1c registry,” Kaushal said. “We hope to create another valuable resource to help improve New Yorkers’ lives. As for cystic fibrosis, New York City, [along with] the participants of our network, is home to several Cystic Fibrosis Foundation-supported care centers. The care centers have a great deal of experience in encouraging their patients to participate in research as well as quickly integrating the results of research into the care they provide.”

Meanwhile, researchers with the patient-centered SCAlable National Network for Effectiveness Research (pSCANNER) led by the University of California, San Diego, will use their award to analyze congestive heart failure and Kawasaki disease. The clinical network plans to utilize a distributed architecture to integrate data from three existing networks covering more than 21 million patients, explained principal investigator Lucila Ohno-Machado, M.D., Ph.D., a professor of medicine at the University of California, San Diego, School of Medicine and founding chief of the Division of Biomedical Informatics.

The pSCANNER research will build on past efforts funded by the NIH and the Agency for Healthcare Research and Quality (AHRQ). “We will collect network data on kids who were diagnosed with Kawasaki disease and hopefully the ones who were misdiagnosed, but have elements of the disease,” Ohno-Machado said. “With a rare disease, it makes more sense to collect more data from different places. Congestive heart failure is very common, very expensive, and very devastating, and it’s so important that we understand better treatment and prevention.”

As the clinical networks prepare their upcoming research, a consortium of health care leaders is preparing to coordinate the efforts. The PCORnet Coordinating Center, led by Harvard Pilgrim Health Care Institute, will align the networks’ activities and develop the policies and procedures the networks will follow, said Richard Platt, M.D., chair of the Department of Population Medicine at Harvard Pilgrim Health Care Institute and co-director of the PCORnet Coordinating Center.

“The major pieces are making sure that patients, clinicians, and delivery system leaders all are at the table in determining their priorities,” Platt said. Second, “is creating the technical infrastructure, policies, and procedures that will allow multicenter studies to be conducted rapidly and efficiently and at a lower unit cost than has ever been possible.”

Platt and other PCORnet administrators emphasized that the networks’ research and efforts will have an invaluable impact on the future of health care study and medical advancement. “We see this as a really important foundation in the creation of the national learning health system,” Platt said. “[This is] the opportunity of our professional lifetimes to change the way evidence is generated to improve patient outcomes.”

May 2014 Home

“PCORnet is paradigm shifting—the sheer number of people who will benefit from research done across the network is breathtaking.”

—Ann Bonham, Ph.D.