By "engagement in research," we refer to the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the research process—from topic selection through design and conduct of research to dissemination of results. We are constantly working to understand engagement in PCORI-funded projects, to document the ways that engaging with research projects improves the research, the challenges that result from research engagement and the ways research teams have overcome challenges, and to identify and share best practices for engagement in research.

Beginning with the first projects PCORI funded, the pilot projects, we began to ask researchers about what type of stakeholders they were working with, and what influence those non-researchers had on the research. We now ask all awardees to share detailed information about their experiences with engaging patients and other stakeholders. We also ask the research partners, to hear from all perspectives what difference engagement makes.

PCORI has developed several tools to support research engagement, e.g., PCORI Engagement Rubric, and frequently holds webinars, conference panels, and training sessions designed to share best practices. PCORI has also made a searchable bibliography of research engagement literature available to the public.

Publications

Researchers, Patients, and Other Stakeholders’ Perspectives on Challenges to and Strategies for Engagement
A Heckert, LP Forsythe, KL Carman, L Frank, R Hemphill, EA Elstad, L Esmail, J Kennedy Lesch, Research Involvement and Engagement. (October 2020)

What Motivates Patients and Caregivers to Engage in Health Research and How Engagement Affects Their Lives: Qualitative Survey Findings
R Hemphill, L Forsythe, AL Heckert, A Amolegbe, M Maurer, KL Carman, R Mangrum, L Stewart, N Fearon, L Esmail,  Health Expectations. (December 2019)

Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute
LP Forsythe, KL Carman, V Szydlowski, L Fayish, L Davidson, DH Hickam, C Hall, G Bhat, D Neu, L Stewart, M Jalowsky, N Aronson, CU Anyanwu, Health Affairs. (March 2019)

Methods and Impact of Engagement in Research, From Theory to Practice and Back Again: Early Findings from the Patient-Centered Outcomes Research Institute.
L Forsythe, A Heckert, MK Margolis, et al. Quality of Life Research. (May 2017)

Evaluating Patient and Stakeholder Engagement in Research: Moving from Theory to Practice
L Esmail, E Moore, A Rein. Journal of Comparative Effectiveness Research. (2015)

Patient and Stakeholder Engagement in the PCORI Pilot Projects: Description and Lessons Learned
L Forsythe, L Ellis, L Edmundson, et al. Journal of General Internal Medicine. (July 2015)

Conceptual and Practical Foundations of Patient Engagement in Research at the Patient-Centered Outcomes Research Institute
L Frank, L Forsythe, L Ellis, et al. Quality of Life Research. (May 2015)

A Systematic Review of Approaches for Engaging Patients for Research on Rare Diseases
L Forsythe, V Szydlowski, MH Murad, et al. Journal of General Internal Medicine. (August 2014)

What's Happening at PCORI?

The Patient-Centered Outcomes Research Institute sends weekly emails highlighting results of our funded studies, newly funded research and engagement awards, opportunities to apply for funding, stakeholder workshops, and original feature stories about our funded projects.

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