The patient-driven research community (PDRC) Learning Network (LN) is funded by the Patient-Centered Outcomes Research Institute (PCORI) and led by NORC and its partners at AcademyHealth. Meaningful patient or participant engagement in research is a foundational principal of PCORI’s work. In its current Strategic Plan, PCORI articulated three goals related to patient and stakeholder engagement in research: 1) developing a community skilled in PCOR; 2) engaging the patient and stakeholder community in the research process; and 3) engaging the community in dissemination.[i] The PDRC LN project builds upon these goals with its objective to build the capacity and foster the sustainability of PDRCs—defined as an organization or group of individuals/organizations that is led and/or governed by patients/participants and/or caregivers whose primary purpose is to enable research that is a priority to their communities. Integral to this process is the establishment and coordination of a learning network of PDRCs. There has long been a need for a forum or platform for systematically sharing lessons learned about engagement among PDRCs associated with PCORI including the Patient Powered Research Networks (PPRNs), Eugene Washington Engagement Awardees (PCORI EAs), and groups associated with PCORI research studies.
With the PPRN Engagement Awards (PPRN EAs) as the foundational members of this network, the PDRC LN kicked off in August 2019 and is working to create an environment for sharing and synthesizing knowledge across projects to advance the role of PDRCs in clinical and care delivery research. Integral to this process is establishing an understanding of the current landscape of PDRCs and their role in clinical and care delivery research. Between September 2019 and January 2020 NORC conducted a landscape review of PDRCs to develop: (1) a taxonomy of PDRCs, including PCORI and non–PCORI funded organizations, and (2) a preliminary conceptual model that captures how different types of PDRCs facilitate clinical research. In addition NORC coordinated the development of a PDRC learning network whereby PPRN EAs and, in the future, other PDRCs, can come together to share problems, solutions, and lessons learned and identify approaches to ongoing sustainability to serve the unique needs of their communities. Learning network activities include monthly calls, monthly online seminars that bring in external experts, and annual in-person meetings of network members. Additionally, the NORC team is facilitating three workgroups related to key PDRC priorities around representativeness, sustainability and digital engagements. These workgroups, comprised of leaders in the field of engagement science along with members of the learning network, will serve as a forum for addressing challenges and recommending solutions faced by PDRCs across these priority areas.
- Between September 2019 and January 2020 NORC conducted a landscape review of PDRCs to develop: (1) a taxonomy of PDRCs, including PCORI and non–PCORI funded organizations, and (2) a preliminary conceptual model that captures how different types of PDRCs facilitate clinical research. Together, these tools provided PCORI with a greater understanding of the variety of PDRCs in the health care research ecosystem, the range of activities they conduct, their unique capabilities, and the challenges they face in terms of conducting research, building partnerships and capacity, and achieving anticipated outcomes.