Aktive Patientinnen und Patienten in der Krebsregistrierung

The German National Cancer Plan already ascribes great importance to patient orientation in oncology. Patients are increasingly taking on a more active role through participatory structures in the healthcare system, either in the direct physician–patient relationship using shared decision making (SDM) or in research.

The involvement of patients is becoming more and more important in the work of cancer registries. With the project “Being informed—cancer registry data for active patients (InKaPP)”, the Cancer Registry Rhineland–Palatinate (RLP) is increasingly focusing on the topic of patient participation in cancer registration. A dashboard, which will be developed together with patients, allows those affected to access, comment on and add information to their own cancer registry data. The project will use guided interviews to find out how these options are used and how they can contribute to greater information transparency, empowerment and data quality.