To Advance Public and Patient Engagement in Research, We Must Demonstrate Its Value

PCORI is proud to be a leader in urging more patient and public engagement in health research. That’s why we require it in everything we do, including the studies we fund. And we’re pleased to see that others in the healthcare community are also increasingly advancing this work.

But we also know that researchers, patients, and other healthcare stakeholders want more information about how best to incorporate engagement in their work, along with tangible examples of the impact it has. We’re aware that providing such information is the best way to support those interested in engagement as well as to answer those who remain skeptical about the value of patient and public engagement in improving patient care and outcomes.

PCORI’s Director of Public and Patient Engagement, Kristin L. Carman, PhD, MA, explains how patient and stakeholder engagement leads to more useful research results, and how PCORI’s efforts have influenced the culture of research.

That’s why we were thrilled to be among an international set of authors of a recent editorial in The BMJ, one of the few major professional journals to involve patients in its peer-review process. As the editorial’s title clearly indicates, if we’re serious about public and patient engagement, we need to be serious about its evaluation.  

As we wrote with our co-authors, “Strengthening the science underpinning [public and patient engagement] is key to ensuring that it becomes an integral, robustly conducted, and well resourced component of research, not a last minute add on.”

This editorial responds to an ever-growing body of evidence that the approach we are taking is shifting the broader landscape of health research, and the care it informs, to be more patient centered. It is part of a package of recent articles in The BMJ, including one research paper, two commentaries, and our editorial.

We hope that our editorial provides insights to the healthcare community on how and why to evaluate engagement in research, along with best practices for doing so. PCORI is proud of its ongoing commitment to conducting and supporting these evaluations.