While strategies to evaluate the influence of engaging patient partners in research are beginning to emerge, a systematic set of measures for assessing the impact of patient engagement in research (PER) on study approaches and outcomes is lacking. Existing measures skew more toward measuring the process of engagement and less toward measuring downstream outcomes of patient-partner engagement in all phases of research.
During a workshop, researchers and patients recently identified key research outcomes and corresponding measures to evaluate the impact of PER. The group proposed a set of core components by each stage of a research study: patient-centered, meaningful, team collaboration, understandable, rigorous, adaptable/integrity, legitimate, feasible, ethical and transparent, timely, and sustainable. Measuring the Impact of Patient-Engaged Research: How a Methods Workshop Identified Critical Outcomes of Research Engagement is co-authored by Leah Tuzzio, MPH.