Engaging critically: exploring the varying roles of lived experience advisors in an implementation science study on management of opioid prescribing

Involvement of individuals with lived experience, also called “patient partners”, is a key element within implementation science, the study of how to put evidence into practice. While conducting a 4-year implementation study focused on improving physician management of opioid prescribing, our research team worked closely with Lived Experience Advisors (LEAs). LEAs were involved throughout the study, including developing patient-facing recruitment material, informing the analysis of results, and as a regular reminder of the real-world impact of this work. However, through regular critical reflection, we acknowledged that we were still uncertain how to articulate the impact of LEA involvement. As a team, we continually discussed why and how people with lived experience were involved in this study. We probed ill-defined concepts such as “patient perspective”, which was particularly complex for a study focused on changing physician behaviour with indirect impact on patients. This critical reflection strengthened trust and rapport between team members (characteristics deemed essential to meaningful patient involvement), while underscoring the value of including concerted time to explore the muddier aspects of engagement. In short, patient engagement did not proceed as smoothly as planned. We advocate that “best practices” in the engagement of people with lived experience include regularly setting aside time outside of practical study tasks to interrogate complex aspects of patient engagement, including reflecting on how and why individuals with lived experience are involved.