There are many reasons why interest in stakeholder engagement in health research has grown rapidly in recent years. Pressure is mounting for patients to take more active roles in their health and care, and the financial burden is also falling more directly on their shoulders. Researchers are also embracing the notion that, for their work to be relevant and useful, they must consider the questions and outcomes of interest to patients. The process of involving patients and other stakeholders in the design, conduct, and dissemination of research aligns with these trends and reflects an understanding that engaged research produces better, more actionable results.
Not surprisingly, one of the big forces behind the push for meaningful stakeholder involvement in research is simply that funders are starting to require it. The Patient-Centered Outcomes Research Institute’s (PCORI) engagement rubric offers guidance and details how, when, and at what level stakeholders should be engaged in patient-centered outcomes research (PCOR). PCORI’s leadership has helped spur greater interest and infrastructure investment among research and other organizations. Despite these efforts, many questions on how to design and execute an effective approach to engaged research remain unanswered.
Lessons from pioneers and early adopters can be instructive on these points. As a resource, AcademyHealth staff recently created a Compendium of Web-Based Stakeholder Engagement Resources. This compendium, which was developed as part of our work on the PCORI Pilot Projects Learning Network, organizes a variety of gray-literature internet resources related to the engagement of stakeholders in research. The resources included in this compendium cover a range of audiences, interests, and steps in the engagement process.
For researchers and stakeholders who are just getting started, there are training documents and even a “quick start” guide to community-engaged research. Those more experienced in doing engaged research may be more interested in the resources on evaluating engagement and the lists of communities, networks, and databases available to learn more about the other players in this space.
The compendium also provides resources on three areas closely related to stakeholder engagement in PCOR: 1) community-university partnerships, 2) patient involvement in health care and 3) community-based participatory research. While these resources have a slightly different focus, we think they can be useful in building your—and your organization’s—capacity to conduct engaged research.
The compendium reflects a point-in-time web scan and isn’t comprehensive, but it does serve as a helpful reference for researchers and stakeholders and a jumping off point for further inquiry. We invite you to add to the conversation in the comments section below by sharing other relevant resources. Additional suggestions for the compendium can also be sent to Laura Esmail.