Nothing about us without us: evaluating the quality of engagement in a patient advisor program

The Patient Advisor Program at Henry Ford Health is an innovative initiative aimed at strengthening patient engagement in research, quality improvement, and clinical care. Patient engagement yields increased relevance of studied topics and builds trust within communities. As such, it is vital to evaluate the quality of patient engagement across research programs. The purpose of this study was to evaluate the quality of engagement for patient advisors (PA) enrolled within the Patient Advisor Program.

A cross-sectional survey, sent via REDCap to 578 active and inactive PAs, utilized the Public and Patient Engagement Evaluation Tool-Patient (PPEET) consisting of 19-items, closed- (n = 13) and open-ended (n = 6) items across the core principles of quality engagement: (1) Communication and supports for participation (3 items), (2) Sharing your views and perspectives (4 items), (3) Impacts and influence of the engagement initiative (4 items), and (4) Final thoughts (n = 3). All closed-ended questions were answered on a 5-point Likert scale with anchors from strongly disagree to strongly agree and analyzed using descriptive statistics. Open-ended questions were analyzed using a 3-step qualitative content analysis.

The final dataset of those who completed the PPEET survey included 199 PAs with a mean age of 60.7 years (SD = 15.6). PAs were primarily women (75.6%), and identified as White (64.3%), followed by Black (30.7%). Most PAs had been engaged for 1-3 years (30.7%) and participated in an average of 4.6 research projects (SD = 7.32). Across the 4 PPEET domains, the proportion of participants who agreed or strongly agreed with the items ranged from 62.9% to 92% for communication and supports for participation, 83.9% to 91.5% for sharing your views and perspectives, 79.4% to 83.4% for impacts and influence, and 85.9% to 88.9% for final thoughts PAs commented on areas of improvement (e.g., a broader range of research opportunities/topics), program strengths (e.g., diversity), and program impact (e.g., positive impact on the advisors themselves).

PAs reported quality engagement experiences in the Patient Advisor Program. Future research is needed to standardize evaluation of patient engagement in research to provide generalizable results.

Not applicable.