The Patient-Centered Outcomes Research Institute (PCORI) engages patients and other stakeholders in all phases of comparative clinical effectiveness research and patient-centered outcomes research. Engagement can take many forms, and as such, PCORI’s practice of engagement has become a real-time, live experiment that offers a rich set of experiences to generate evidence about engagement.
This qualitative study for PCORI—Research Portfolio Data Mining, Engagement Rubric Evaluation, and Adaption—seeks to understand whether engagement of patients and other stakeholders changes the course of PCORI-funded studies, and if so, how. In the first phase of the project, AIR conducted 109 interviews with researchers and their stakeholder partners from a sample of 58 PCORI-funded research projects reflecting the diversity of PCORI’s research portfolio in terms of study completion status, funding announcement type, and priority area. These interviews explored the full extent of how engagement can influence or have an impact on these studies. High-level findings were recently presented at a plenary session—How Engagement Is Making Research More Useful—at PCORI’s 2019 annual meeting.
In the next phase of the project, AIR will conduct six in-depth, qualitative case studies of PCORI research projects to understand strategies and factors that support or inhibit engagement. Researchers will interview people working on each project to explore perspectives on what has worked or not worked to promote engagement and how strategies have been adapted to different settings and populations and over time.