PCORnet® was a hot topic at the 2023 PCORI Annual Meeting, which took place October 4-5 virtually and in Washington, D.C. Every year, the event brings together researchers, clinicians, patients, and other partners across the health care ecosystem who are passionate about furthering patient-centered research. PCORI funded PCORnet in 2013 as a national resource where high quality health data, patient partnership, and research expertise unite to deliver answers that advance health outcomes.
The flagship infrastructure in patient-centered research
In her opening remarks, PCORI Executive Director Nakela Cook highlighted PCORnet as the flagship infrastructure for enhancing and accelerating patient-centered outcomes research, one of PCORI’s five national priorities for health. Via a partnership of clinical research networks representing major healthcare institutions across the U.S., the Network allows research teams to generate rich insights into 30 million patient encounters at more than 40 health systems. These data are deidentified to adhere to stringent patient privacy standards.
“With PCORnet, every patient interaction becomes an opportunity to leverage data that’s collected during healthcare delivery to conduct comparative clinical effectiveness research (CER) and build a stronger evidence base,” Cook said.
Cook’s claim of a stronger evidence base is backed up by hundreds of studies and more than 600 publications enabled by PCORnet data resources. This year’s plenary session titled “Powered by PCORnet: Infrastructure to Fuel National-Scale Research” gave attendees a snapshot of some of the most impactful research that the Network has powered over its 10-year history. Session speakers highlighted the growth and contributions of PCORnet over the last decade and discussed how PCORnet is positioned to support national-scale research to speed evidence generation.
PCORnet® Coordinating Center Co-Principal Investigator Adrian Hernandez opened the session by teeing up the big-picture health challenges we are currently facing in the U.S.: our healthcare burden is up, life expectancy is down, and bending the curve back requires deeper engagement of patients and communities. At the same time, the speed of science is evolving to open up new treatment options and opportunities.
“PCORnet has been designed to be part of the solution,” Hernandez said. “It is an impactful infrastructure for patient-centered CER that we hope that everyone can take advantage of.”
Hernandez emphasized PCORnet-enabled collaboration between researchers, clinicians and patient partners helps fuel both high-quality observational studies and pragmatic trials that are ushering in a new era for patient-centered CER. He called out landmark studies like ADAPTABLE, which utilized virtual visits and other pragmatic design elements before the pandemic popularized them, as well as PREVENTABLE, the PCORnet Bariatric Study, and HERO, which all addressed patient-centered questions that require insights from the broad and diverse fabric of the U.S. population.
Mariell Jessup, Chief Science and Medical Officer at the American Heart Association, discussed the importance of PCORnet as a resource to facilitate more diverse representation in research as well as supporting the conduct of research results that will be implemented in clinical care settings.
“I see PCORnet as key to supporting discoveries from the bench to bedside,” Jessup said. “We’re excited about the future, and we think that PCORnet is a very important tool.”
The plenary also looked ahead to opportunities for PCORnet in its second decade. Mark Pletcher, professor of Epidemiology and Biostatistics at the University of California, San Francisco, highlighted two ideas: using the PCORnet® Common Data Model to study the quality of patient care, and expanding data collection to include insights from outside health care systems to better capture the U.S. population.
“PCORnet is uniquely situated to support the conduct of large studies that include the collection of patient-reported outcomes,” Pletcher said.
Two days, multiple shout-outs
While the plenary was the most high-profile event centering PCORnet at the annual meeting, the Network was referenced throughout the two-day event.
In the session “PCORI Rare Disease Research: Portfolio Highlights and Future Direction,” Anita John, Medical Director of the Washington Adult Congenital Heart program Children’s National Hospital, lauded PCORnet as especially powerful in the context of rare disease research. As an example, John shared how PCORnet data resources supported the formation of the Congenital Health Initiative, the first patient-powered longitudinal registry to improve the future of care for those living with congenital heart disease.
“This is something that we have wanted to do as a community for a long time, but our partnership with PCORnet has really enabled this to flourish,” John said.
In the breakout session “How PCORI is Advancing Social Determinants of Health (SDOH) Data Collection and Use in Research to Promote Health Equity,” Nik Koscielniak, program officer for the PCORI Infrastructure and Innovation program, explained how PCORI expanded PCORnet to promote the collection and accessibility of SDOH data, which are related to the conditions in which people live, work, learn, and play. These factors have a significant impact on overall health outcomes and can help us understand the root causes of health disparities.
“Infrastructure and capacity-building efforts are essential to support improvements and standards in the collection, accessibility and use of SDOH data for research and learning,” he said.
If you weren’t able to make the PCORI Annual Meeting but are interested in learning about more outcomes from PCORnet-leveraged research, check out the recordings of the sessions from the two-day event.