Patient-Driven Research Community Learning Network

Mid adult nurse helps a senior man fill out a medical form as he waits to be seen by a doctor.

Challenge

The Patient-Centered Outcomes Research Institute (PCORI) sought to create a learning network of patient-drive research communities (PDRC).

In its strategic plan, the PCORI articulated three goals for patient and stakeholder engagement in research:

Develop a community skilled in patient-centered outcomes research.
Engage the patient and stakeholder community in the research process.
Engage the community in dissemination.

To meet these goals, PCORI funded the Patient/Participant-Driven Research Community Learning Network (PDRC LN). A PDRC is defined as an organization or group of individuals or organizations that is led or governed by patients, participants, and caregivers. A PDRC’s primary purpose is to enable research that is a priority to the communities they serve.

Solution

NORC and our partner AcademyHealth led the PDRC LN.

The PDRC LN launched in August 2019 with eight PPRN Engagement Awardees (PPRN EAs) and an aim to share and synthesize knowledge that would advance the role of PDRCs in clinical and care delivery research.

Learning network activities included monthly calls that served as a forum for the LN to share lessons and workshop challenges, bimonthly online seminars that brought in external experts, and annual virtual meetings of network members.

Additionally, NORC facilitated three workgroups related to key PDRC priorities around representativeness, sustainability, and digital engagement.

Finally, NORC conducted a landscape assessment, which included a review of peer-reviewed and gray literature on patient-driven research, identification and categorization of potential PDRCs in the field, and key informant interviews with different types of PDRCs.

Result

This project, which ended in January 2022, resulted in a number of key deliverables to support the learning network.

Deliverables from this project include:

The Value Proposition Playbook for Participant-Driven Research in Health Care (VPP) is an action-oriented, step-by-step roadmap that draws from current evidence and experience and contains a series of practical exercises designed to enable PDRCs to think about how they define their value and emerge with a plan to communicate their value proposition to potential partners.
The Patient Driven Research Community Research Activities Brief contains important lessons learned describing the functions and capacities of PDRCs in the health research landscape that could be a helpful tool for PDRCs to identify and articulate their value to potential research partners.
The Strategies for Improving Patient Representativeness in Research Governance Report examines the significance of and strategies for improving patient representativeness in research governance and provides examples of governance recruitment and retention practices sourced from literature scans and case study interviews.
The Digital Strategies for Returning Value to Research Participants Report examines principles for returning value to research participants and provides examples of digitally based engagement strategies sourced from literature scans and case study interviews.