The perspectives of cancer patients are already frequently taken into account in patient care, for example through self-help representatives or patient advisory boards in hospitals. In research, however, the systematic involvement of those affected is still in its infancy. It is therefore an important goal of the National Decade Against Cancer, which was proclaimed by the Federal Ministry of Education and Research (BMBF) at the beginning of 2019, to involve patients in all phases of oncological research.
The German Cancer Research Center (DKFZ) established the Cancer Research Patient Advisory Board back in 2017/2018. In order to expand patient involvement in Germany, the partnership between patients and researchers has also been firmly implemented in the expanded National Center for Tumor Diseases (One NCT). The aim is to take the patient perspective into account in all phases of cancer research.
Involved and strengthened
Patient representatives have been involved since the concept phase of the expanded NCT. As members of the planning working groups, they played a decisive role in shaping the development process. The NCT Patient Research Council was founded to anchor patient participation in the NCT. This is the voice of NCT patient participation nationwide and advises the NCT committees across all sites. This structure is supplemented by local patient research councils at the NCT sites.
Patient Expert Academy for Tumor Diseases (PEAK)
To enable patients to become involved in research, education and training courses are needed that provide background knowledge on clinical studies or scientific methods, for example. To meet this need, the Patient Expert Academy for Tumor Diseases (PEAK) offers practical courses for interested patients and patient representatives.
Conference "Patients as partners in cancer research"
The annual Conference "Patients as Partners in Cancer Research" offers participants a wide range of insights into patient involvement. The focus is on personal exchange and the discussion of current topics. The next conference will take place in Dresden from September 20-22, 2024.
One NCT: closely networked with organizations and initiatives
To ensure that patient involvement in cancer research can develop its full potential, the NCT patient representatives work together with other organizations and initiatives in Germany:
- Cancer Information Service (KID)
- Existing local and national self-help structures
- National Decade Against Cancer
- Haus der Krebsselbsthilfe
- BAG Selbsthilfe
- Die Achse (rare diseases)
- DKG / AIO Patient Advisory Council
- National Cancer Prevention Center (NCPC)
Are you interested in joining the NCT Patient Research Council?
Please contact the NCT Patient Participation Coordinator:
Dr. Annette Schilling
NCT Central Office
Coordinator NCT Patient Participation
Phone: +49 6221 42-1598
annette.schilling-at-dkfz-heidelberg.de