NCT Patient Involvement Retreat: Shaping the Cancer Research of Tomorrow – Together

Patient involvement – how can it be practically implemented and shaped?
This was the central question of the NCT Patient Involvement Retreat held in early April in Heidelberg. Sixty participants from the NCT Patient Research Councils, the DKFZ Patient Advisory Board, the Coordination Office for Patient Involvement, the NCT administrative office, the accompanying research team on patient involvement, and the PEAK Patient Expert Academy came together to help shape how patient involvement is practiced.

Welcome Address by Michael Baumann: Diversity of Perspectives and Pioneering Work
Michael Baumann, Chairman and Scientific Director of the DKFZ, expressed his gratitude to the patient representatives for their valuable contribution to strengthening patient orientation at the NCT. In his welcome speech, he emphasized:
"It is important to us to increasingly include a diversity of perspectives – with respect to different life realities, experiences, and backgrounds."

Patient involvement in cancer research is still a relatively new topic in Germany. The patient representatives at the NCT are doing outstanding pioneering work in this area, as Baumann noted. Even though the NCT — with its six sites now united under 'One NCT' — has only been active for 22 months, patient participation already plays a key role. What that means in practice became clear over the course of the retreat: At the NCT, patient representatives work as equal partners alongside researchers and clinicians – contributing to the development of clinical studies as well as advising on and implementing numerous processes.

Experiences and Challenges: Exchange Through Workshops
In addition to further developing and refining the current mission statement, the retreat focused on sharing previous experiences. In various workshops, participants analyzed what is already working well and where challenges remain. The great mutual appreciation among patients, researchers, and medical professionals became particularly evident:
"We really do work together as equals," said one patient representative.

At the same time, participants emphasized the need for more awareness – especially when it comes to making the added value of patient involvement and the range of collaboration opportunities more visible.

The Role of the Patient Research Councils: Advocates and Advisors in Cultural Change
On the second day, the focus was on the roles and tasks of the Patient Research Councils – patient representatives who promote patient involvement across regions, nationally, and across cancer types.

They act as points of contact, sparring partners, and advisors to regional NCT directorates and everyone involved in study processes. In this coordinating and supportive role, they are instrumental in shaping the cultural shift toward true partnership in cancer research. They see themselves not only as the voice of patients, but also as multipliers who carry the idea and mission of patient involvement outward.

They inform, advise, and support both in clinical structures and in important committees – and they advocate for the interests of those affected. In doing so, they make an essential contribution to the long-term establishment of patient involvement in research.

Joint Projects and New Impulses
The retreat program was rounded off with presentations from several cross-site project teams working together on further developing patient involvement at the NCT. The accompanying research team and the PEAK Patient Expert Academy also gave insights into their work.

Conclusion and Outlook: A Long but Rewarding Journey
The heart of the retreat was the personal exchange – a space for open dialogue that participants found especially valuable.
"It’s excellent that we’re able to meet here and exchange experiences in an open setting," said one of the coordinators for patient involvement, summarizing the essence of the event.

The intensive dialogue allowed for the merging of diverse perspectives – not only in terms of patient involvement but also for the NCT as a whole. The wide range of ideas and expertise led to a clear realization: Patient involvement strengthens the NCT and makes a vital contribution to advancing cancer research in Germany and beyond.

Markus Wartenberg, spokesperson of the NCT Patient Research Council and Patient Research Council NCT West, concluded the retreat by reminding participants that they can be proud of what has already been achieved – and that there is still a long journey ahead:
"I look forward to continuing this journey together with you."