The result was a “network of networks”–20 Patient-Powered Research Networks (PPRNs) built and governed by stakeholder groups focused on specific conditions and community interests; 13 health system-based Clinical Data Research Networks with data from electronic health records (EHRs) and other sources; and two networks based in health plans. The PPRN concept, a research organization led by patients and organized around the evidence needs of patients, was of particular interest to those who see value in supporting truly patient-centered clinical research.

Over the years of funding, the PPRNs made a good deal of progress in meeting the goal of preparing for and launching research within their organizations. Collectively, they have consented more than 405,000 people to participate in research. They’ve led or participated in more than 40 research studies. Through outreach to their memberships, they’ve identified and prioritized patient-relevant research questions across dozens of conditions. They’ve amassed substantial collections of patient-generated health information and developed capabilities to extract data from EHRs. Through the PPRNs, we’ve learned much about what patient and caregiver-driven research organizations are capable of.

Leveraging PPRNs’ Expertise and Resources

PCORnet is now approaching an important and long-planned transition point as PCORI winds down its role as the network’s sole funder. PCORnet’s steering committee has created and charged a new entity—the People-Centered Research Foundation (PCRF)—with planning the network’s future as a self-sustaining, robust research platform and resource.

While PCRF is focusing on the CDRNs, PCORI continues to appreciate the strategic importance and potential of PPRNs. Given this, PCORI’s Board of Governors has approved our plan to build on and leverage their highly activated and engaged patient and caregiver communities and expertise in patient-centered research.

The first step has been to offer all PPRNs extensions of funding contracts with them through the end of March 2019 with a modest amount of additional funding. This will allow them to work with us on a longer-term approach to supporting their work as a more integral element of PCORI’s overall research efforts.

The second step is a limited competition funding opportunity* released in late October 2018. This competition is open to all PPRNs and we anticipate funding around 10 awardees, which will each receive up to $350,000 for up to 24 months, starting as early as next April.

The funding will help strengthen awardees’ capacity to generate and prioritize research ideas, strengthen their capacity to disseminate study results, participate in a PPRN learning network, and explore opportunities for further collaboration with CDRNs and with PCRF. We are especially interested in helping the PPRN communities further develop their expertise in the area of participant-driven research, including patient-preference studies, standardizing patient-reported outcomes, and identifying meaningful health outcomes.

We’re proud of the pioneering work done by PCORnet’s PPRNs to blaze a path toward giving patients and those who care for them a true, authoritative voice in guiding research and decisions about how patients’ health data are used in clinical studies. And we are excited about the work we have yet to do together.

*This blog post was updated on November 20, 2019. The limited competition funding opportunity was initially opened through the Eugene Washington PCORI Engagement Awards Program. It has now been reclassified as a Research Infrastructure funding opportunity.