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Patient Involvement in Cancer Research

Our goal: patient involvement at eye level

Research for a life without cancer - that is the mission of the German Cancer Research Center. Scientists at DKFZ investigate the causes and mechanisms of cancer development and progression and develop new strategies for prevention, early detection, diagnosis and treatment through innovative translational research. Patient involvement at eye level is an important objective for the DKFZ, in basic research and especially in the context of an increasing focus on patient-oriented, clinical research.

The DKFZ explicitly supports the "Allianz für Patientenbeteiligung in der Krebsforschung in Deutschland (only available in German)" of the National Decade Against Cancer, an initiative of the BMBF together with other partners, and the "Principles for Successful Patient Involvement in Cancer Research " as developed and formulated in the context of the EU Trio Presidency of Slovenia, Portugal and Germany in September 2021.
We would like to draw your attention to a publication of the DLR (project management agency for the BMBF) "Aktive Beteiligung von Patientinnen und Patienten in der Gesundheitsforschung – eine Heranführung für (klinisch) Forschende" (Publication only available in German)

In 2018, the DKFZ became the first institution in Germany to establish a Patient Advisory Board specifically for research, the DKFZ's Patient Advisory Board for Cancer Research . The committee advises the DKFZ Management Board from a patient perspective and brings their views into the research strategy of the DKFZ and DKTK. The members of the Patient Advisory Board are themselves patients or parents with lived experience of different types of cancer. Among other things, the Patient Advisory Board supports the Management Board and scientists of DKFZ in increasing the public's understanding of and trust in modern cancer research. The DKFZ provides expertise via the "Patient Academy". Current topics in cancer research, the DKFZ's research strategy and selected research projects, as well as the framework conditions for research in Germany are discussed at the meetings.

Together with excellent partners from university medicine, the DKFZ runs the National Center for Tumor Diseases (NCT) . In the course of the extension of the NCT within the framework of the National Decade against Cancer, the NCT Patient Research Council was founded, which was already involved at eye level in the concept development phase. For the first time, patient representatives have a direct say in the development of a long-term research institution. Important achievements are the Patient Expert Academy (PEAK) and the National Conference "Patients as Partners in Cancer Research". PEAK aims to provide basic knowledge on (cancer) research-related topics and to prepare patient representatives to contribute with their experience and expertise. The National Conference "Patients as Partners in Cancer Research" has been hosted annually since 2022 and offers a platform for exchange and networking in addition to expert lectures, seminars and interactive formats. The next conference will take place from 20-22 September 2024 in Dresden.

In the German Consortium for Translational Cancer Research (DKTK) , the DKFZ maintains translational centers at university partner sites. The DKTK is one of six German Centers for Health Research (DZG) , which have jointly established a Working Group patient involvement, which e.g. deals with the digitization of health data across institutional boundaries and disciplines.

At the DKFZ's Cancer Information Service (KID) , patients, interested members of the public, and experts receive individual answers to all questions on cancer. In an online event series , experts from the Cancer Information Service and invited professionals provide information on relevant aspects of cancer.

With the involvement of patients, the DKFZ is developing additional, new participatory formats that incorporate the perspective of those affected in cancer research and meaningfully complement the work of the Patient Advisory Council. An innovative tool aimed at involving patients in the planning and implementation of oncology projects at an early stage is the participation platform . Anonymous short surveys on oncological research topics can be used to collect the perspective of patients in a low-barrier manner and in compliance with data protection regulations.


patient-involvement (at)

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