The perspectives of cancer patients are often already taken into account in health care, for example through self-help representatives or patient advisory councils in hospitals. In cancer research, the systematic involvement of patients is still in its infancy. 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, is to involve patients in all phases of oncological research.
Already in 2017/2018, the German Cancer Research Center (DKFZ) established the Patient Advisory Board Cancer Research. In order to expand patient participation in Germany, the partnership between patients and researchers is also firmly implemented in the expanded National Center for Tumor Diseases (NCT). The aim is to take the patient perspective into account in all phases of cancer research.
Patient representatives were already involved in the concept phase of the expanded NCT. As members of the working groups, they played a decisive role in shaping the development process. In order to anchor patient participation in the NCT, the national NCT Patient Council of the expanded NCT was founded. The patient council is the voice of NCT patient participation nationwide and advises the national NCT committees. This structure is supplemented with local patient councils at the NCT sites.
In order for patients to be able to participate in research, education and training programs are necessary, in which knowledge about clinical studies or scientific methods, for example, is imparted. To meet this need, the National Patient Expert Academy for Tumor Diseases (PEAK) offers practical courses for interested patients and patient representatives.
The National Conference "Patients as Partners in Cancer Research" offers participants versatile insights into patient participation. The focus of the event is on personal exchange and discussion of current topics.
In order for patient participation in cancer research to develop its full potential, the NCT patient representatives work together with other organizations and initiatives in Germany. These include, for example, the Cancer Information Service (KID), existing local and national self-help structures, the National Decade Against Cancer, the House of Cancer Self-Help, the BAG Self-Help, Die Achse (rare diseases), the DKG / AIO Patient Advisory Board and the National Cancer Prevention Center (NCPC).