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Engage all stakeholders in the health world in research

A Research Institute advocates for greater involvement of patients and other stakeholders in research processes.

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 PCORI projects engaged patients and others as consultants and collaborators in the study. the study design, selecting study outcomes, tailoring interventions to meet patients’ needs and preferences, and enrolling participants have been defined in common. 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.

The engagement contributions shared likely represent for authors the most explicit and impactful aspects of engagement. PCORI’s research has already begun to move from an investigator-led research enterprise to one that works more closely with patients, consumers and other stakeholders. While additional evidence about the conduct and impact of engagement in research on health outcomes is needed, these early findings begin to show the perceived value of engagement for patient-centered comparative effectiveness research

These findings can catalyze a stronger shift toward a culture of engagement. In fact, culture change is under way in both health research and health care as other funders, research entities, and health care systems emphasize engagement. Ultimately, evidence will be more useful and relevant to decision making when patients and stakeholders are fuller participants in the research process. This can only help improve both health and health care.

Laura P. Forsythe, Kristin L. Carman, Victoria Szydlowski, “Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute”, March 2019, Health affairs e-journal. Available at: https://www.healthaffairs.org/doi/10.1377/hlthaff.2018.05067