Reconstructing the cancer journey: The impact of adolescent and young adult (AYA) patient advisory boards on survivor experiences and advocacy

Purpose The purpose of this study was to explore how serving on a patient advisory board shaped experiences on cancer journeys for Adolescent and Young Adult (AYA) cancer survivors.Methods Data was collected from 15 participants who served on the AYA patient advisory boards at the University of Texas Health Austin Livestrong Cancer Institute (LCI) and MD Anderson Cancer Center. Participants completed in-depth, semi-structured interviews via Zoom. Narrative thematic analysis was used to analyze transcribed, de-identified interviews.Findings Major themes emerged from the data related to advisory boards facilitating emotional and social connection, advocacy for self and others, and collaborative projects at each cancer center. The patient advisory board served as a mode for participants to find meaning out of their cancer diagnosis and experience serving on the advisory board.Conclusion Findings suggest AYA patient advisory boards are not only beneficial for providers and healthcare systems, but also for patients.