The Engaged Patient

Abstract

Patient engagement is ever more essential to developing innovative strategies that shape how comprehensive, integrated medical care is delivered to cancer patients and their families. With over 300 licensed professionals across the network, Cancer Support Community (CSC) is the largest nonprofit employer of psychosocial oncology mental health professionals in the United States. Through decades of working with cancer patients, families, and caregivers, CSC has developed a portfolio of evidence-informed programs that engage patients around their most pressing concerns—unwanted aloneness, loss of control, and lack of hope. CSC’s facilities, which provide support groups, education, exercise and nutrition classes, children’s programs, and social activities, are available at no cost for families. These services are replicated on CSC’s helpline and digital platforms. This chapter highlights a comprehensive integrated model of developing and delivering evidence-informed psychosocial programs and services in the community. The chapter also reviews CSC patient-centered research projects including (1) the Cancer Experience Registry®, an online observational study of cancer patients, survivors, and informal caregivers to identify and quantify their psychosocial experiences; (2) CancerSupportSource®, a reliable, valid, multidimensional distress screening program for patients and caregivers; and (3) Open To Options®, a shared decision-making program that helps patients prepare a highly personalized list of questions, concerns, and goals to share with their doctor. The extent to which the psychosocial oncology community can integrate care across healthcare systems, by leveraging new technologies, behavioral and implementation science principles, and community-based services, will determine its success in meeting the needs of cancer patients.