Resources, Roles, and Returning Value: Lessons from Patient- and Participant-Driven Research Communities (Part 2)

As Patient and Participant-Driven Research Communities (PDRCs) have become widespread, PCORI embarked on an initiative to understand the patient and participant-driven research landscape more fully and organize a learning network of patient and participant-driven research communities as a venue for them to share knowledge, coordinate activities, and develop resources.

In partnership with NORC and AcademyHealth, PCORI assembled a Learning Network of eight PDRCs to create a forum for peer-to-peer learning. Three workgroups were subsequently formed to address challenges identified by learning network members with the goals of providing forums for sharing learnings and identifying generalizable lessons that could be shared broadly. Ultimately, 3 priority gap areas were identified: improving representation, enhancing digital engagement, and supporting sustainability.

Improving Representation in PDRC Governance

Underrepresentation in research governance, or the oversight of research processes such as research project design, implementation, and participant recruitment, is an ongoing challenge. Research teams that reflect the diversity of the community being studied heighten study validity and encourage equitable dissemination of study findings. Likewise, involvement of PDRCs in research governance promotes diversity by virtue of their inclusive nature.

The workgroup identified examples of strategies to enhance the diversity of patient representatives in research governance, implemented in the real world by PDRCs, and proposed a framework to guide the work of others. The workgroup produced a report and issue brief, and a blog further describing this work.

The 8 Participants of the Patient-Driven Research Community Learning Network Image

Digital Strategies to Enhance Engagement

Research engagement strategies that recognize the value of participants’ lived experiences and actively involve participants in the process can make research findings more useful to a broader group of people. This is an especially important goal considering that most clinical trials are not diverse in terms of participants’ racial and ethnic identities, gender, age, and pregnancy status. Engagement in research can also benefit participants by yielding a better understanding of their condition, increased personal confidence to navigate it, and a strengthened support system.

Digital and online-based strategies are a key area of focus in providing value to research participants. Using digital tools, the Learning Network fostered community around research and its dissemination and application. In shared, online spaces, participants can build trust and understanding with researchers and connect with other participants, who can relate to their experiences.

The workgroup examined digital tools and technologies that present opportunities to address practical barriers to engagement in research. Workgroup members produced a report and issue brief, and Health Affairs posted a blog on their findings.

Sustainability of PDRCs

By definition, participant-driven research communities are collaborative and encourage patients to partner with other stakeholders in the research process. However, there is often a complex interplay between PDRCs and external stakeholders, including health systems, academic institutions, and pharmaceutical companies. Mutual respect and recognition of reciprocal benefit are critical to creating resilient, sustainable partnerships.

Through the PDRC Learning Network, a practical guide—the Value Proposition Playbook for Participant-Driven Research in Health Care— was developed to help PDRCs form effective partnerships with diverse stakeholders. The Playbook provides strategies for engaging participants and demonstrating tangible value to partners. The guide encourages PDRCs to identify shared goals and create a concrete plan to facilitate partnerships with external stakeholders. The Playbook is intended to serve as a dynamic resource that can be used repeatedly to reevaluate PDRC goals and priorities. A blog highlighting the roadmap laid out by the Playbook was also developed.

Patient and participant-driven research communities play an important role in PCORI-funded research. PDRCs prioritize patient, participant, and caregiver values while maintaining trustworthy research partnerships. PDRCs can serve as a unique bridge to unite patients, researchers, and other stakeholders. As PCORI moves forward with implementing its National Priorities for Health and Research Agenda, it will be critical to maintain PDRCs as part of the infrastructure that supports patient-centered outcomes research.