De Jesus Anne, Faveur Anne, Garnier Lydia, Servant Claire, Le Bars Sabrina, Cousin Gérard, Dagorne Patrick, De La Rocque France, Delgrange Stéphane, Guidy Corinne, Manighetti Joëlle, Roux Raimonda, Sazy Thérèse, Scull Isabelle, Terrade Catherine, Turkel Liliane, Veret Fabienne, Escudier Bernard, Billard Camélia, Rieutord André, Khoury Jane, Blot François
Comité de patients et aidants, Gustave-Roussy, université Paris-Saclay, 114, rue Édouard-Vaillant, 94800 Villejuif, France; Relation avec les usagers, direction de la qualité et patientèle ; Gustave-Roussy, université Paris-Saclay, 114, rue Édouard-Vaillant, 94800 Villejuif, France; Comité d'éthique, Gustave-Roussy, université Paris-Saclay, 114, rue Édouard-Vaillant, 94800 Villejuif, France.
Comité de patients et aidants, Gustave-Roussy, université Paris-Saclay, 114, rue Édouard-Vaillant, 94800 Villejuif, France.
Bull Cancer. 2024 Jun;111(6):576-586. doi: 10.1016/j.bulcan.2024.02.010. Epub 2024 Apr 24.
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.
在肿瘤学领域，患者的地位具有天然且强大的合理性。癌症是一种常见疾病，虽有诸多独特之处，但不同病理类型之间也存在共同特征，涉及从预防到可能的姑息治疗阶段或癌症康复后的各种问题，有利于个人和集体的决策过程。如今，患者参与在医疗体系的各个层面都至关重要，从简单的信息告知到真正的参与（共同构建）。二十年来，位于维勒瑞夫的综合性癌症中心古斯塔夫 - 鲁西一直开展具体的思考与行动，成立患者及照护者委员会体现了这些思考与行动，此外还有一个机构指导机构，它诠释了从“为患者工作”到“与患者合作”的转变。在直接护理层面，主要推动的工作涉及患者与专业人员之间的共同决策以及陪伴患者。在机构层面，我们能看到医院项目或服务的专业知识、机构文件（信息及预立医疗指示表格等）的制定以及内部评估（审核）。在政策层面，参与联合国癌症研究机构的患者体验工作组有助于与其他中心进行更协调的部署。联合国癌症研究机构制定了一份词汇指南，对患者资源、同伴协助者、培训人员、评估人员和协调人员进行了定义。这种合作方式对患者、他们的亲人、照护者都有益处，必须加以推广并催生新的研究工作。
