Human Journey behind Food Is Medicine: A Participatory Study With a Lived Experience Advisory Group

BACKGROUND: initiative seeks to advance Food Is Medicine interventions by integrating patient-centered insights into program design. This study aimed to explore the lived experiences of individuals managing diet-related chronic conditions to better understand the emotional, cultural, and systemic factors influencing dietary behavior change. METHODS: Using a participatory action research approach, a diverse Lived Experience Patient Advisory Group was convened. Fourteen participants engaged in a multiphase process including surveys, daily food diaries, individual interviews, and a 2-day in-person workshop. These activities were designed to elicit personal narratives, identify barriers and motivators to dietary change, and co-develop potential solutions. Thematic analysis was used to synthesize insights across all engagement activities. RESULTS: Fifteen subthemes emerged, grouped into 3 broader themes: facing change, understanding barriers, and acting. These themes highlighted the complex interplay between identity, social norms, access, and self-efficacy in shaping food choices. Participants also proposed a framework of opportunities for intervention, emphasizing the importance of support systems, culturally relevant education, and systemic alignment across health care, community, and policy sectors. CONCLUSIONS: Behavior change in food consumption is a deeply personal and socially embedded process. Centering lived experience in Food Is Medicine program design offers critical insights for creating more inclusive, effective, and sustainable interventions. This work underscores the need for coordinated, multilevel strategies to support dietary behavior change at scale.