Facilitating Meaningful Engagement on Community Advisory Committees in Patient-Centered Outcome Research

Background: Reflecting on the processes and practices used to engage community stakeholders in patient-centered outcome research strengthens participation at the project level and contributes more broadly to developing knowledge about effective participatory processes and methods.

Objectives: We conducted a process evaluation of ongoing activities of a Patient Advisory Committee (PAC) formed around the development of an individualized decision aid for older women with early stage breast cancer.

Methods: In-depth qualitative interviews were conducted with PAC members to obtain their input on the effectiveness of the project’s participatory approach and identify barriers to participation.

Results and Lessons Learned: Although there was general support for the aims of the study, patient knowledge gaps and meeting facilitation style limited participation. Members made suggestions on improving collaboration within the group that, when implemented, resulted in increased participation and revitalized interest in the project.

Conclusions: Results suggest that engaging committee members in a process of evaluation and collective reflection during a research collaboration can break down barriers to collaboration, build relationships, create opportunities for co-learning and strengthen researchers’ capacity to engage meaningfully with stakeholders.