Patient ­Involvement ­in ­Cancer ­Research

Research for a life without cancer – the mission of the German Cancer Research Center. DKFZ scientists study the causes and mechanisms of cancer and develop strategies for prevention, early detection, diagnosis, and treatment through innovative translational research. Patient involvement plays a vital role at DKFZ and is integrated wherever it is meaningful to make research more relevant, from basic science to translational and patient-centered clinical research.

Commitment to strengthening patient involvement in cancer research

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)

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Patient ­involvement ­at DKFZ

Patient involvement is a key component of the research strategy of the German Cancer Research Center (DKFZ). DKFZ relies on partnership and collaboration to promote patient-centred approaches in all areas of research – from basic research to clinical translational research.

Patient Advisory Council for Cancer Research at DKFZ

In 2018, the DKFZ became the first institution in Germany to establish a Patient Advisory Council specifically for research, the DKFZ's Patient Advisory Council 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. The members of the Patient Advisory Council are themselves patients or parents with lived experience of different types of cancer. The Patient Advisory Council supports the DKFZ Management Board and scientists at DKFZ in increasing the public's understanding of and trust in modern cancer research and as well as improving the framework conditions for research. The DKFZ provides expertise via the "Patient Academy". In the biannual meetings current topics in cancer research are discussed, as well as the DKFZ's research strategy and selected research projects.

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    Dr. Delia Braun

    Coordination Patient Involvement at DKFZ

Patient ­involveme­nt at NC­T

Patient Research Councils

Together with excellent partners from university medicine and other outstanding research partners, the DKFZ runs the National Center for Tumor Diseases (NCT) at various locations in Germany. 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. They provide advice to researchers on cancer trials and are involved in all central structures of the NCT. 

Empowering Patients – Fostering Expertise and Exchange

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 26-28 September 2025 in Berlin.

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    Dr. Annette Schilling

    Coordination NCT Patient Research Council

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    Ulrike Schmollinger

    Head of PEAK

Involving ­patients ­- for better c­ance­r resea­rch

In a joint article, Rudolf Hauke, Speaker of the DKFZ Patient Advisory Council, and Dr. Susanne Weg-Remers, Head of the Cancer Information Service, advocate for greater involvement of patients in cancer research. They explain how patient perspectives can make research more practical, improve studies, and strengthen Germany as a research hub. At the same time, they emphasize the importance of training and support for patients, as well as appropriate financial funding.
Read the full article (german)

Cancer Information Service

Personalized answers from the Cancer Information Service

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.

Further ­participative ­formats

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 fragdiepatienten.de . 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.
Go to fragdiepatienten.de

Patient ­involvement in ­the ­German ­Centers for ­Health ­Research

Patient involvement is gaining importance not only in cancer research but also across other health research areas. Through the German Consortium for Translational Cancer Research (DKTK), DKFZ collaborates with the German Centers for Health Research (DZG) to integrate patient perspectives and exchange expertise on patient involvement.

In the DKTK, DKFZ maintains translational centers at university partner sites. The DKTK is one of eight German Centers for Health Research (DZG).

The German Centers for Health Research (DZG) have jointly established a working group "patient involvement", which e.g. deals with the digitization of health data across institutional boundaries and disciplines.
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