Designing with, not for: Centering Lived Experience in Humanitarian Non-Communicable Disease Programs

Abstract Background Non-communicable diseases (NCDs) pose growing challenges in humanitarian and resource-limited settings, where disrupted health systems and structural inequities hinder effective care. While participatory approaches are gaining traction, the integration of lived experience into NCD program design in these contexts remains limited and understudied. This review examines how lived experience has been incorporated into NCD programs in humanitarian and LMIC settings, identifying approaches, barriers, and enabling factors that influence meaningful engagement. Methods A systematic search of five databases (Scopus, PubMed, Embase, Open Grey, Eldis) yielded 2,047 records screened using predefined criteria in line with PRISMA-ScR guidelines. Due to the nascent nature of the field and a specific focus on humanitarian settings, four studies were selected for full-text analysis. To enhance insight, a thematic analysis was performed to systematically identify and synthesize key barriers, facilitators, and strategies influencing lived experience engagement in NCD program design. Results Engagement was shaped by health literacy, gender norms, cultural beliefs, socioeconomic status, and structural barriers such as limited access and fragmented services. Strategies included peer-led education, psychosocial support, digital platforms, and integration of NCD care into primary health systems. Enabling factors were supportive policies, sustainable financing, community ownership, and trust between providers and affected populations. Conclusions Lived experience remains underutilized in NCD program design in humanitarian contexts, despite its potential to enhance equity and responsiveness. Embedding people-cantered approaches that elevate experiential knowledge is essential for designing effective, context-specific interventions. Future efforts should prioritize enabling policy, long-term investment, and research on scalability across crisis-affected settings. Key messages • Integrating lived experience into NCD care design can enhance responsiveness and equity in humanitarian settings, fostering more resilient healthcare systems. • Embedding people-centered strategies rooted in lived experience enables inclusive, sustainable NCD care models, improving outcomes for vulnerable populations in humanitarian health systems.