Establishing a Patient Centered and Community Based Adolescent & Young Adult Oncology Council

Adolescents and young adults (AYAs) with cancer face distinctive medical and psychosocial challenges. Most AYAs are treated at community cancer centers, although little data exists on the experiences and concerns of AYAs in that setting. With consultation from the renowned Australian peer engagement organization CanTeen, we will create 1) a patient-centered AYA council, trained in PCOR principles, to advise researchers on the design of AYA-focused clinical research studies and 2) a bi-directional stakeholder communication platform using the website and Twitter feed of Stupid Cancer, a major young adult cancer support organization in the United States. We will efficiently solicit information and opinions on AYA-focused questions from many stakeholders and then feed results back to AYAs nationwide. Our goal is to advance patient-centered care practices and research initiatives targeting AYAs at community cancer centers.