Measurement Matters: Refining and Validating a Patient-Centered Outcomes Research Engagement Measure

Numerous engagement frameworks have been created to guide patient and broader stakeholder engagement in research, including PCORI’s Engagement Rubric and Collective Insight’s PAE Attention Framework. The Measurement Matters project will develop the Patient-Centered Outcomes Research Engagement Measure, or PCOR-EM, to measure meaningful engagement. The project will lay the groundwork for understanding how, if at all, certain engagement practices can lead to improved researcher and patient outcomes, such as knowledge, improved research design and improved patient health. More specifically, the project team will: 

• Apply recent literature and frameworks to its existing engagement ideas to ensure they are comprehensive and inclusive.
• Implement qualitative research methods, including surveys, focus groups and interviews, to assess whether or not the PCOR-EM is clear.
• Recruit up to 225 individuals who lead patient-centered research projects to complete the PCOR-EM and provide information on their project’s outcomes.
• Implement quantitative research methods (classical and modern measurement analytic methods) to test the PCOR-EM’s ability to measure what project staff want to measure and find relationships between engagement practices and outcomes.

Measurement Matters will implement a thoughtful Engagement Plan to inform the project and guide its dissemination of findings. This includes a Steering Committee of patients and researchers. It also includes involving expert technical advisors who are internationally recognized for their experience as patients, engaging underserved communities, and measurement. Project staff also will partner with PCORnet® to outreach to pilot sites, pilot the PCOR-EM and disseminate findings. Findings from each project phase will be summarized using plain language summaries and shared through the project’s listserv, project websites and community webinars.