Learn. Collaborate. Change. Patient Involvement That Makes a Difference

Patient involvement changes cancer research when people affected by cancer contribute their experiences, help shape research questions, and review clinical studies from their perspective. The 5th National Conference “Patients as Partners in Cancer Research” in Essen demonstrated what this collaboration looks like in practice. Around 200 participants came together under the theme “Learn. Collaborate. Transform.”

“Patient involvement is the engine that drives the NCT,” emphasized Dirk Schadendorf of NCT West/Essen. Germany’s Federal Ministry of Research, Technology and Space (BMFTR) also regards this approach as a model for success. In his welcoming remarks, Parliamentary State Secretary Matthias Hauer, Chair of the Strategy Committee of Germany’s National Decade Against Cancer, highlighted the expansion of the NCT and the importance of involving patients in research from an early stage. Their experiences should inform the development of new approaches from the outset. “If we consistently continue along this path, excellent research will translate into better care even faster,” Hauer said.

Patient Voices That Change Research

The workshops offered a firsthand look at how this works in practice. Patients raised critical questions about study designs: “How much data protection do we really need?” “What support will I receive during the study—including psychological support?” “What does quality of life actually mean?”

And sometimes the feedback was refreshingly blunt: “Nobody understands this.”

Clinicians and researchers described this direct perspective from people affected by cancer as an important contribution to their work. It makes studies more relevant, easier to understand, and more closely aligned with patients’ needs. Accordingly, participants made clear that they want a “strong patient voice”—in research as well as in conversations with policymakers.

Patient representative Harald Pohl has experienced firsthand that this voice is being heard: “I’m just an ordinary person. But the doctors listen to us.” Being involved in clinical studies, he said, is “an incredible feeling.”

The conference covered a broad range of topics, including quality of life and data protection, pharmacogenetics and personalized oncology, new approaches to cancer treatment, and artificial intelligence. Throughout the event, discussions repeatedly returned to the conditions under which research takes place and how patients can help shape it.

Sharing Ideas, Learning From One Another

This year’s conference featured a poster session for the first time. A total of 27 projects from the community were submitted, five of which were also presented in short talks. The posters gave the many different patient involvement initiatives a dedicated forum and sparked extensive face-to-face exchange.

Patients, researchers, and clinicians gathered around the posters to discuss experiences from their projects and make new connections. Topics ranged from patient advisory boards and jointly developed clinical studies to digital health care services, artificial intelligence, and personalized oncology.

Understanding How Research Works

On Sunday, another key element of patient involvement took center stage: the Patient Expert Academy for Tumor Diseases (PEAK). Through its training programs, PEAK equips patients and patient representatives with the knowledge they need to participate meaningfully and effectively in cancer research.

The session “Why Studies Take Time: Regulations, Ethics, and Decision-Making Processes” illustrated just how practical this training can be. Julia Ritzerfeld of the German Cancer Research Center (DKFZ) and Isabel Virchow, Head of the Clinical Trial Center at NCT West/Essen, explained the approval processes for clinical trials involving medicinal products and medical devices, as well as the composition of an ethics committee.

Participants then shared their own assessments of responsibilities and timelines, gaining a firsthand understanding of just how complex the path of a clinical trial can be.

One insight ran through the entire conference: Good research requires many perspectives, clear frameworks—and time. Patient involvement addresses precisely these needs by bringing the experiences and questions of people affected by cancer into these complex processes.

The conference was organized by the German Cancer Research Center (DKFZ), with support from the BMFTR through Germany’s National Decade Against Cancer and in cooperation with Haus der Krebs-Selbsthilfe – Bundesverband and German Cancer Aid.

The key takeaway: Patient involvement thrives on collaboration—and on research shaped together with patients.

The next conference will take place in Ulm from September 17–19, 2027. More information will be available soon here.