The PCORnet® National Stakeholder Group met in May to review recent progress of PCORnet over the past six months and to provide strategic guidance that supports PCORnet® Network Partners in their efforts to enable national-scale patient-centered comparative clinical effectiveness research (CER). The PCORnet® Stakeholder Group works to bridge an understanding of federal- and private-sector health data and research initiatives that are potentially relevant to PCORnet® Network Partners.

At the meeting, members learned about principles and strategies to guide PCORnet, the Maturity Model for PCORnet, and the potential of new data query reports to answer big questions in intellectual and developmental disabilities and maternal morbidity and mortality. Members were also updated on the progress of PCORnet data resources, which represent 30 million patient encounters at 13,000 clinical care sites across the country resulting in more than 35 national-scale PCORnet® Studies. Research using the PCORnet infrastructure has resulted in over 400 publications.

“Learning about the power of PCORnet has been eye opening for me. There are so many ways this powerful infrastructure can be used to help research national priorities for health,” said Ricardo Rocha, head of Medical Affairs at Intellia Therapeutics. “I am particularly excited to see the growth in national-scale PCORnet® Studies that are answering questions critical to the work of companies like Intellia, as well as the broader research community.”

The PCORnet National Stakeholder group was formed in 2023 and now includes members representing life science partners; federal agencies (including the Agency for Healthcare Research and Quality, the U.S. Food and Drug Administration, the U.S. Centers for Disease Control and Prevention, the Centers for Medicare and Medicaid Services, the National Institutes of Health, and the Office of the National Coordinator for Health Information Technology); and advocacy organizations (including Faster Cures, the American Heart Association, and Community-Campus Partnerships for Health).

The objectives of the group are to:

• Understand national research priorities
• Share information about the landscape of data sciences related to patient-centered CER
• Make recommendations to advance methods and approaches to pragmatic clinical research
• Think about opportunities to expand partner engagement
• Discuss how to expand implementation and dissemination opportunities to improve healthcare delivery and population health

The group is planning an in-person meeting later in 2024 where they will continue to bridge the power of PCORnet to exciting opportunities in government, industry, and patient advocacy.

“It’s clear that the PCORnet infrastructure is a powerful tool for researchers across the U.S.,” said Al Richmond, executive director of Community-Campus Partnerships for Health “Collaboration is essential to improving the health of the nation, and PCORnet continues to be a key partner in leading patient-centered research.”