Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute

Charged with ensuring that research produces useful evidence to inform health decisions, the Patient-Centered Outcomes Research Institute (PCORI) requires investigators to engage patients and other health care stakeholders, such as clinicians and payers, in the research process. Many PCORI studies r...

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Bibliographic Details
Published in:Health Affairs 2019-03, Vol.38 (3), p.359-367
Main Authors: Forsythe, Laura P., Carman, Kristin L., Szydlowski, Victoria, Fayish, Lauren, Davidson, Laurie, Hickam, David H., Hall, Courtney, Bhat, Geeta, Neu, Denese, Stewart, Lisa, Jalowsky, Maggie, Aronson, Naomi, Anyanwu, Chinenye Ursla
Format: Article
Language:English
Subjects:
Asthma
Caregivers
Clinical outcomes
Clinical trials
Codes
Cognition & reasoning
Consultants
Diabetes
Discovery tools
Feasibility
Health status
Interest groups
Obesity
Patient-centered care
Patients
Research centers
Research methodology
Stakeholders
Stroke
Systematic review
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Summary:Charged with ensuring that research produces useful evidence to inform health decisions, the Patient-Centered Outcomes Research Institute (PCORI) requires investigators to engage patients and other health care stakeholders, such as clinicians and payers, in the research process. Many PCORI studies result in articles published in peer-reviewed journals that detail research findings and engagement's role in research. To inform practices for engaging patients and others as research partners, we analyzed 126 articles that described engagement approaches and contributions to research. PCORI projects engaged patients and others as consultants and collaborators in determining the study design, selecting study outcomes, tailoring interventions to meet patients' needs and preferences, and enrolling participants. Many articles reported that engagement provided valuable contributions to research feasibility, acceptability, rigor, and relevance, while a few noted trade-offs of engagement. The findings suggest that engagement can support more relevant research through better alignment with patients' and clinicians' real-world needs and concerns.
ISSN:0278-2715
1544-5208
DOI:10.1377/hlthaff.2018.05067