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Next patient expert conference: 20-22 September 2024 in Dresden

Learn - cooperate - change - and have fun:

Active participation was required at the 2nd National Conference "Patients as Partners in Cancer Research" in 2023.

It was a special conference this year: for the first time, patient representatives came together under the umbrella of "One NCT". Markus Wartenberg, spokesperson for the NCT Patient Research Council, welcomed everyone to this 2nd Patient Expert Conference, which took place in Heidelberg from 15-17 September 2023.

"The expanded NCT is a gigantic project," said Prof Dr Michael Hallek, spokesperson for the NCT Steering Committee, in his welcoming address. He was delighted that such a diverse group of NCT representatives, researchers, patient organisations, advisory boards and patients had come together to continue the important joint dialogue. "We have already managed the dialogue well, and my colleague Prof. Michael Baumann and I are committed to continuing this dialogue successfully." One question is constantly at the centre of Hallek's work: "Why are we actually doing this?"  The Patient Expert Conference repeatedly provided a variety of answers to this question.



The NCT's success factor: patients as research partners

Patients are research partners, that is the success factor of the NCT, said Wartenberg. They should be involved in the research proposals and contribute their perspectives, concerns, experiences and knowledge to well-founded cancer research. "This requires different qualifications - whether as bus drivers or managers - and different backgrounds," said Wartenberg, who used this comparison to echo the previous online contribution by Roger Wilson, who, as a patient representative of sarcoma in the UK, contributed the international perspective. The contributions at the conference made this claim clear, but the lively informal dialogue during the breaks also made an important contribution to the network of relationships that forms the basis of the work at the NCT.

The relevance of patient involvement at federal level was also emphasised by Alexia Parsons, head of the National Decade Against Cancer project group at the Federal Ministry of Education and Research. She emphasised that the patients' perspective is completely different and valuable for research.


The NCT closes a gap in research

The NCT is intended to close a major gap, as quickly became clear on the Saturday of the conference. "Clinical-translational research is the bottleneck in Germany," said Bärbel Söhlke, member of the NCT Patient Research Council. In international comparison, Germany does not do so well here. This should change with the expanded NCT. Prof Dirk Jäger (NCT Heidelberg) and Dr Maria Rius (Scientific Director of the NCT Office) explained how in their presentation of the NCT study portfolio before the talk round went into medias res.

Taking doctors with you

"We have to get out of the silos," demanded Prof Sonja Loges from the DKFZ. "We have to take our colleagues in the facilities and clinics with us and get those in private practice on board." However, demands were also made of the patient representatives themselves: "We need to become more active and define our own goals," wrote Bärbel Söhlke, for example, on the to-do list. The suggestion that each NCT site should take up the experiences from the industry and publish KPIs, targets and successes publicly on an up-to-date monitor was met with great applause.

Various workshops brought the conference participants into close dialogue and creative development of new ideas. Again and again, cancer patients or their relatives contributed their perspectives and experiences.

Benefits for patients

Active participation was also required in the Marketplace formats: How do I design materials for patients that are clear and easy to understand? How do I comply with data protection in self-help and patient organisations and advisory boards? How is a scientific publication structured? What do I need to bear in mind when working with pharmaceutical companies? Or: How do you win over patients, relatives and interested parties for patient representation? Not only could a lot of knowledge be packed into one's own rucksack, but the contributions from the plenary session also flowed in part into the work of the speakers and organisations. The topic of Patient Reported Outcomes (PROs) - the documentation of treatment success by the patients themselves - was the crowning finale of the conference "Patients as partners in cancer research", where the participants on the podium were able to try things out for themselves. The measures (PROMs) for this make an important contribution to improving quality in the healthcare system.