Van Hoof Wannes, Schittecatte Gabrielle
Cancer Centre, Sciensano, Brussels, Belgium.
Arch Public Health. 2024 Aug 26;82(Suppl 1):133. doi: 10.1186/s13690-024-01370-w.
Rights, preferences, needs and expectations of patients and citizens can only be respected and addressed if they are well understood. As such, a continuous, systematic and formalised dialogue between patients, citizens and policy makers is required to ensure ethical and socially appropriate cancer prevention, diagnostics, treatment and care. Relying on donations and project-based funding is not a sustainable way to ensure patient involvement and representativeness in policy. Patient organizations need long term, structural support to fulfil their role as patient representatives and support network in order to deliver the best possible service and to play their role as a professional representative of their disease-specific community. Inequalities can only be tackled if they are properly identified. This requires the definition of appropriate determinants fit for (inter)national comparison and extension and linkage of good quality data registries for cancer that allow the monitoring these inequalities.
只有充分理解患者和公民的权利、偏好、需求及期望，才能予以尊重和满足。因此，患者、公民与政策制定者之间需要进行持续、系统且正式的对话，以确保癌症预防、诊断、治疗及护理符合伦理道德且适应社会需求。依靠捐赠和基于项目的资金并非确保患者参与政策制定并具有代表性的可持续方式。患者组织需要长期的结构性支持，以履行其作为患者代表和支持网络的职责，从而提供尽可能优质的服务，并在其特定疾病群体中发挥专业代表的作用。只有正确识别不平等现象，才能加以解决。这需要定义适合（跨）国家比较的适当决定因素，并扩展和链接高质量的癌症数据登记处，以便监测这些不平等现象。
