Esophageal Cancer Patient Network: a scalable platform for integrating patient voices across the research lifecycle

Esophageal cancer is associated with substantial symptom burden and long-term impacts on quality of life, yet research priorities have historically been shaped with limited direct input from patients and caregivers. Although patient engagement is increasingly recognized as essential for improving the relevance, feasibility, and accessibility of health research, existing national and international frameworks often provide limited guidance on how to operationalize engagement within specific disease contexts. This gap is particularly evidence in esophageal cancer, a relatively low-prevalence disease characterized by complex treatment pathways and heterogeneous patient experiences. To address this need, we established the Esophageal Cancer Patient Network (ECPN), a disease-specific patient engagement initiative designed as a reusable research tool rather than a single-project advisory group. This paper describes the conceptual foundation, governance structure, and implementation strategy of the ECPN. Central to the model is a publicly available Terms of Reference, a continuous engagement framework spanning the full research lifecycle, and clearly defined levels of patient involvement. The ECPN emphasized sustained engagement, enabling patients and caregivers to develop research-related expertise over time through training, mentorship, and repeated collaboration with clinicians and scientists. Designed to support multidisciplinary and international research, the ECPN facilitates collaboration across institutions and healthcare systems while remaining open to participation from patients, caregivers, and researchers beyond a single center. By providing practical infrastructure for sustained, transparent, and disease-specific patient engagement, the ECPN addresses a critical gap between high-level engagement principles and real-world implementation in esophageal cancer research.