About the Patient Experts Conference
The annual National Conference “Patients as Partners in Cancer Research” organized by the National Center for Tumor Diseases (NCT) has become an important forum for exchange, new perspectives, and shared learning. Since 2022, patients, physicians, and researchers have been coming together here as equals—openly, honestly, and with great commitment. The goal is to shape cancer research in a way that more strongly incorporates the experiences, needs, and realities of those affected.
Learn. Collaborate. Change.
The next conference “Patients as Partners in Cancer Research” will take place from September 17 to 19, 2027 in Ulm.
We look forward to three days full of inspiring talks, interactive workshops, and lively discussions on the active involvement of patients in cancer research. Take this opportunity to network with researchers, clinicians, and patient representatives, and to work together toward a more patient-centered future for cancer research.
Do you have experiences, projects, or ideas that show how patient involvement is shaping research? We invite you to submit an abstract and showcase your work.
Contact
If you have any questions about the conference, please contact the coordinator for patient involvement at the NCT:
Dr. Annette Schilling, phone: +49 6221 42-1598, nct-patientenbeteiligung-at-dkfz.de
How patient involvement is being practiced in increasingly diverse ways
The 5th Patients as Partners in Cancer Research conference took place in Essen this year, which felt like a home game for me. It is wonderful to see how patient involvement has evolved over the past few years. In addition to many long-time participants, there were once again several new faces. The submitted experience reports came from all regions of Germany and even from Austria.
Because we were unable to include all submitted contributions in the program, we introduced a poster session for the first time, which was met with great enthusiasm. The intensive discussions at the posters and during the breaks once again showed me how diverse patient involvement has become in practice and how many different ways it is being shaped.
I was also particularly pleased to hear researchers present successful collaborative projects with patients. To me, the conference demonstrates not only how much progress has already been made, but also how many new ideas and connections continue to emerge from these partnerships. I am already looking forward to next year’s conference.
Patient involvement improves the quality of research
As a physician and researcher, the particular value of the conference for me was that patient involvement was discussed as a matter of scientific quality and continuous improvement. In clinical research, it is essential to consider which outcomes are most meaningful to patients, how studies can be designed in a more patient-centered way, and how data privacy requirements can be aligned with rigorous scientific standards.
The discussions on personalized oncology highlighted that new diagnostic and therapeutic approaches can only realize their full potential when they are meaningfully integrated into everyday clinical practice. Particularly insightful contributions from the audience focused on tumor heterogeneity and the varying responses of tumors to treatment, both of which are key challenges in advancing personalized cancer medicine.
The workshop on data privacy was equally noteworthy. It was remarkable to see how the topics of patient safety and scientific progress were discussed so intensively, yet in such a constructive and balanced manner.
I am taking away a wealth of ideas for future studies as well as many valuable new connections. Examining scientific questions together from different perspectives is immensely valuable and helps foster more relevant, impactful, and patient-centered research.
Shaping research together with patients
For us, both personally and as an organization, this was our first time attending the NCT conference. Our main focus was on networking with the NCT sites, other patient advocacy and support groups, as well as engaging in dialogue with researchers and clinicians. I was particularly impressed by the wide variety of workshops and expert presentations. We deliberately attended as a group of four in order to gain as many insights and perspectives as possible.
In the field of brain tumors in particular, it became clear to us how important stronger collaboration between patients, researchers, and healthcare providers is. Many questions remain unanswered, and treatment options are still limited. That is why we need not only more research, but also greater patient involvement.
Through PEAK, we can receive targeted training as patient representatives, enabling us to contribute our experiences in a meaningful and well-informed way to the development of clinical studies. Research should not be conducted merely for patients, but together with patients.
The first inquiries we received from researchers and clinical institutions following the conference have shown us that this perspective is both valued and needed. As a brain tumor patient advocacy organization, we are committed to continuing along this path and look forward to participating again next year.