The health care research landscape is changing. Patient-driven research, led by patients and stakeholders with lived experience, is shifting the paradigm for how health care research is conceived and conducted to ensure that findings are relevant, ready for implementation, and trusted by key individuals and communities.

Patient and participant-driven research communities, or PDRCs, are organizations or groups of individuals or organizations that are led or governed by patients and caregivers. A PDRC’s primary purpose is to enable research that is a priority to the communities they serve. The business models in which PDRCs operate are complex and often rely on meaningful collaboration with diverse players in the health research ecosystem including clinicians, health systems, academic institutions, pharmaceutical and biotechnology companies, philanthropic organizations, and PDRC community members. Providing value to their many stakeholders while maintaining the trust and respect of the patient communities they serve is the key to sustainability for both patient-driven research and the PDRCs that facilitate it.

Beginning in 2019, the Patient-Centered Outcomes Research Institute (PCORI) convened eight PDRCs in a learning network to build capacity and promote understanding of sustainability of PDRCs.  The learning network’s sustainability workgroup focused on creating a practical resource tailored to the unique needs of PDRCs. The result is the  Value Proposition Playbook for Participant-Driven Research in Health Care (VPP), 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 following describes the content in each section of the VPP, emphasizing that a PDRC’s own assets and opportunities, engaged participants, and mutually beneficial partnerships are key components of the value they bring to the research landscape and help lay the path to sustainability.

I. Identify Assets and Opportunities

PDRCs bring unique value as boundary-spanning entities that can strengthen the feasibility, acceptability, and rigor of research. They conduct a broad array of activities across the research continuum—from advocating for funding, to defining priorities, to collecting data, to serving as the glue that binds diverse partnerships that make research happen. In the process, they can offer an efficient and effective mechanism for achieving participant-driven, patient-centered research that measurably improves outcomes for affected communities.

The first step in defining value is a clear understanding of the PDRC’s assets and opportunities within the health research landscape. With a strategic understanding of their distinct and often unique capabilities with respect to the broader research landscape, PDRCs can pivot their assets to demonstrate value in activating participants and partners, building capacity for patient-driven research, and shifting the culture of research to be more patient-centered and participant-driven. The VPP provides activities for an organization to examine and evaluate its strengths and shortcomings – identifying what it does well, along with areas of improvement and growth. The VPP also provides tools to assess what external forces may affect the organization’s ability to deliver value.  Are there opportunities to grow the operation?  Are there threats that may impede the ability to provide a successful PDRC to the research community?

Value Proposition Playbook for Participant-Driven Research in Health Care Content Areas

Value Proposition Playbook for Participant-Driven Research in Health Care Content Areas


II. Demonstrate Value to Participants

Demonstrating value to participants acknowledges that not everyone participates in the research process in the same ways or for the same reasons. Participants experience value when they know that their contributions of time, data, and ideas will result in research that improves health care and quality of life for their communities. Participants connect with PDRCs through activities that enable them to influence research agendas; participate in research as a partner or co-investigator; and connect with a broader community with shared experiences and priorities. Making results of research widely known is essential. The VPP outlines multiple strategies for PDRCs to involve participants in ways that are highly attuned to the nature and quality of their engagement at these different levels so PDRCs can successfully deliver value to them on an ongoing basis.

III. Demonstrate Value to Partners

Strategic collaborations between PDRCs and entities with aligned missions and goals can provide resources and skills that complement each other’s capabilities and support one another’s efforts in the health research ecosystem. As PDRCs infuse research with the patient voice, partners that include academic and industry researchers, funders, and other nonprofits, can provide financial and in-kind support to sustain their endeavors. The VPP provides tools to closely examine a PDRC’s current and potential partnerships and assess how to provide value to those partners in ways that preserve PDRCs’ commitment to their community members. The VPP also looks closely at financial partnerships to understand how to increase PDRCs’ appeal to funders relative to their interests and needs.

IV. Craft the Value Proposition

With a robust understanding of their assets and position in the research ecosystem and the various ways in which they deliver ongoing value to participants and partners, PDRCs will be well-prepared for the final section of the VPP in which they craft value proposition statements that resonate with their many stakeholders.

The process of understanding and demonstrating value is dynamic and not a one-time endeavor. One PDRC shared at PCORI’s 2021 Annual Meeting, “The Value Proposition Playbook offers a model for thinking and articulating how your organization or community can adapt the patient-driven research ecosystem right from conception up until sustainability… it allows for a framework or a paradigm for thinking that really enables you to draw out a structured understanding of your own commitment and goals as well as how to communicate about them to potential funders and partners.”

The VPP is an actionable resource that PDRCs and their research partners can use time and again to guide, evaluate and update their sustainability and strategic planning to elevate research that is of most importance to the communities they serve.  The Value Proposition Playbook for Participant-Driven Research in Health Care can be found on the PCORI Engagement Tool and Resource Repository.

The views presented in this article are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors, or its Methodology Committee.  


Gretchen Williams Torres, M.P.P.

Associate Director - NORC at the University of Chicago

Gretchen Williams Torres, M.P.P. is associate director of the health care evaluation group at NORC at the Univ... Read Bio

Prashila Dullabh

Prashila Dullabh, M.D.

Vice President and Senior Fellow - NORC at the University of Chicago

Prashila Dullabh is a a vice president and senior fellow in Health Sciences group and the director of the Heal... Read Bio


Claudia Grossmann, Ph.D.

Senior Program Officer - Patient-Centered Outcomes Research Institute

Claudia Grossmann, Ph.D., is a senior program officer with the research infrastructure team at the Patient-Cen... Read Bio


Michelle Johnston-Fleece, M.P.H.

Senior Program Officer - Patient-Centered Outcomes Research Institute

Michelle Johnston-Fleece, M.P.H., is senior program officer at the Patient-Centered Outcomes Research Institut... Read Bio

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