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

TLDR

PCORI mandates that investigators engage patients and other health‑care stakeholders, such as clinicians and payers, to ensure research produces evidence useful for health decisions. The authors analyzed 126 PCORI articles to inform best practices for engaging patients and other stakeholders as research partners. The study examined how patients and stakeholders were engaged as consultants and collaborators in study design, outcome selection, intervention tailoring, and participant enrollment. Engagement was reported to enhance feasibility, acceptability, rigor, and relevance of PCORI studies, with some trade‑offs, and overall supports research that better aligns with patients’ and clinicians’ real‑world needs.

Abstract

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.