Patient-oriented research – this includes the idea of integrating the knowledge of (former) cancer patients or affected relatives into the implementation of research projects. In order for such patient-oriented cancer research to be expanded in Germany, the commitment of patient representatives is needed. Parents and survivors of cancer who want to get involved as patient representatives met for the first time in June 2022 to discuss the formation of a new network. The event was initiated by the German Childhood Cancer Foundation, a supporter of the National Decade Against Cancer.
Cornelis van Tilburg, medical director of the special consultation for early clinical trials at the Hopp Children's Cancer Center Heidelberg (KiTZ) informed the meeting participants about the different types of clinical trials. "Fortunately, patient representatives are playing an increasingly important role in research. As patient advisory councils, they can contribute to research strategies and endorse selected research projects through opinions and recommendations," he explains. "They thus make quite an important contribution to facilitating access to innovative therapies for children with cancer, which we would like to initiate at KiTZ."
For many years now, the German Childhood Cancer Foundation has been committed to providing advice and support, including financial support, to families with children suffering from cancer. Thanks to its many years of expertise in promoting and funding research projects, it has the necessary contacts in the research fields on which the new network can build in the future. Its task will be to act as a bridge between researchers and patients, so that cancer research can benefit from the experience of patients in the further development of therapeutic approaches in the long term.
Interest is already high: 57 interested parties from all over Germany have already contacted the foundation, including parents of affected children and former cancer patients - so-called ‘survivors.’ They are all united by the desire for more patient orientation in cancer research.
Jan Geißler and Dirk Hellrung, who have been involved as patient advisory councils for years, reported on their personal experiences and motivation. Jan Geißler was diagnosed with leukemia at the age of 28. His own illness prompted him to found Patvocates, a think tank and consulting company for patient advocacy. He was also director of the European Patient Academy EUPATI for six years and today, sits as one of two patient representatives on the strategy committee of the National Decade against Cancer.
Dirk Hellrung looks at the topic of patient participation from the perspective of an affected father whose son has cancer. He has also been involved as a patient representative for many years and, among other things, actively campaigned for the topic of childhood and adolescent cancers to be given greater prominence in the EU Commission's Europe Beating Cancer Plan. Since 2019, he has also been a member of the Patient Advisory Board of the German Cancer Research Center (DKFZ).
The motivation to be able to contribute to this change themselves was clearly noticeable at the launch event, reports Dr. Johanna Schroeder, one of the organizers of the German Childhood Cancer Foundation. The first inquiries from research projects have already been received and are now being passed on to interested patient representatives. In the future, they want to meet at regular intervals to exchange ideas, to further expand the participation of patients in studies - and also to share with each other the successes and joy that this commitment brings.
Source: National Decade Against Cancer - News (in German)
