Meaningful engagement of patients and families in a complex trial of advance care planning in primary care

Engagement of Patient and Family Advisors (PFAs) is increasingly recommended as best practice in research. During the design and conduct of a large trial of advance care planning (ACP) in primary care, we expanded on the funder's (Patient-Centered Outcomes Research Institute®) requirement for an engagement plan and sought to develop an innovative approach to fostering and sustaining meaningful engagement of PFAs throughout all phases of the trial. Structures were developed that integrated PFAs into planning and provided the foundation for their ongoing participation. A continuous quality improvement approach became the framework for ongoing engagement. This involved setting goals; collecting data through surveys, interviews, and observations; and using data to inform revisions to the engagement approach. We also tracked PFA activities and ideas and documented how they impacted the trial. This article summarizes our experience and describes the challenges we faced and how we addressed them. We also outline key lessons learned about encouraging participation; approaches to preparation and coaching; fostering equity across PFAs and other roles in the trial team; creating a range of opportunities that match PFA skills, preferences, and expectations; the importance of regular feedback; and the need for training of all trial staff. Our experience demonstrates that successful and impactful engagement is possible but requires consistent commitment and intentional dedication of sufficient resources.