(C-179) An Evaluation Strategy to Assess Patient Engagement Quality, Impact, and Outcomes

Background: There is growing interest among pharmacoepidemiologic researchers in seeking patient input to guide study design and ensure study outcomes matter to patients. Collaborating with patient advisors early in the research design is best practice and has been shown to make research results more relevant and meaningful for end users. Few pharmacoepidemiologic studies, however, have identified an effective evaluation strategy to support improvements in future patient engagements and organizational planning.

Objectives: To develop and assess a patient engagement evaluation strategy that measures components of return on engagement including engagement quality, impact, patient and research outcomes.

Methods: We planned, conducted, and evaluated a 6-month patient advisory engagement as part of a longitudinal atopic dermatitis cohort study. We administered the Public and Patient Engagement Tool (PPEET) to study team members (n=7), including two patient advisors, at the end of the engagement. In addition, we utilized the PCORI 5-domain Engagement in Research framework to guide additional data collection and analysis.

Results: All participants reported the patient engagement added value to the research study. Patient input contributed to the survey design by identifying patient-relevant domains, prioritizing survey items, and revising survey questions and responses to reflect lived experience. Patient advisors and study team members reported contrasting data points on satisfaction and perceived impact. The PCORI framework identified key modifiers to implementation including resource use, pre- and post- capacity and readiness for engagement, and other costs and benefits to partners. The assessment of these additional domains was necessary to calibrate the return on engagement.

Conclusions: The PPEET assessed necessary attributes of engagement quality from multiple perspectives. The addition of the PCORI Engagement in Research framework expanded the scope of the evaluation by highlighting domains relevant to return on engagement. Future engagement evaluation strategies can benefit from the inclusion of both a validated quantitative evaluation instrument and a conceptual engagement framework.