Patient-partnership in a comprehensive cancer centre: Establishment and roles of a patients and caregivers committee

In oncology, the place of patients has a natural and strong legitimacy. Cancer is a common disease, with many singularities but also common features between pathologies, with issues ranging from prevention to possible palliative phases or post-cancer, and conducive to both individual and collective decision-making processes. Patient engagement is now essential at all levels of the healthcare system, from simple information to real involvement (co-construction). For 20 years, Gustave-Roussy, a comprehensive cancer centre in Villejuif, has implemented specific reflection and actions, embodied by the creation of a patients and caregivers committee and complemented by an institutional steering body that illustrates the transformation of “working for” into “working with”. At the level of direct care, the main works promoted concern shared-decision-making between patient and professional and accompanying patients. At the institutional level, we find the expertise of hospital projects or services, the development of institutional documents (information and advance directives form, etc.), and internal evaluation (audit). At the political level, participation in Unicancer's patient-experience working group has allowed for a better coordinated deployment with other centers. Unicancer has developed a lexical guide defining patient resources, peer helpers, trainers, evaluators and coordinators. This partnership approach is beneficial for patients, their loved ones, caregivers, and must be amplified and give rise to new research work.