Progress as a constant: Oncology is one of the most dynamic and research-intensive medical indications of all. The explosion of knowledge in cancer research is making the fight against tumor diseases ever more successful; medical answers are becoming more and more targeted and precise.In Germany, around every fourth new drug introduced is a cancer drug – and research into new active ingredients is a focus for pharmaceutical companies.
Die Initiative „Vision Zero in oncology“has already früh calls for an active role for the people affected: With their knowledge, commitment and experience, they are indispensable in enriching research, improving care and aftercare and minimizing avoidable deaths. Modern cancer therapy is teamwork – and the patients should be equal and active partners.
At its autumn working conference in Berlin, Vision Zero gave a lot of space to patient participation terms. A reform agenda was presented and discussedwhich is intended to place the affected people at the center of medical and health policy events.
Cancer: Strengthening Care
“We actually have a vrey good supply in Germany. The problem is: the quality”It depends heavily on the zip code,” says Johannes Förner,who suffered from leukemia years ago. An example: Molecular
From the outlook of people with cancer, it is important that research and development is promoted in a targeted manner. In recent months, Germany has been able to make up some of the lost ground in international competition. The reason is a law: The Medical Research Act has succeeded in reducing some of the bureaucratic hurdles. “We have four times more drug studies starting in 2025,” says Förner. Good news: Clinical studies are the link between research and care and thus a central driver of innovation. Especially in the area of cancer, they often create new perspectives in life for those affected when the arsenal of already approved drugs has been exhausted. Though, Johannes Förner also complains: Acceleration still doesn’t work for academic studies that don’t involve drugs. That’s why point three of the patient agenda is: “Accelerating research and innovation.”
Digitalization: From the Nachzügler as a pioneer
!AI: accelerate diagnoses and optimize therapies. photo: ©iStock.com/metamorworks
Vision Zero has also had the vexed topic of digitalization at the top of the agenda for a long time. According to the initiative’s paper,there is a lack of balance in Germany between data protection and people’s interest in the best possible use of data for care and research. “Digitization is the general key” “The key to modern, patient-centered cancer medicine.” This particularly applies to the use of artificial intelligence (AI): “So that k”We can accelerate diagnoses and optimize therapies,” says patient representative Karin Strube. That’s why the data infrastructure must now be created and expanded. and things like the electronic patient record (ePA) need more support. It is currently used by around three percent of the population GKV-Insured used. Leukemia patient Förner is therefore demanding that the medical profession be obliged to fill out the file. From laggard to pioneer – the mThat’s the claim,says Vision Zero.
And that is also part of the reality in Germany: the statutory health insurance does not even spend three percent of it
Strengthening Patient Participation in German Cancer Care
A key focus in improving cancer care in germany is the increased and sustainable inclusion of patients and their representatives. This point, the seventh on a recent agenda, emphasizes the need for greater collaboration and a more structured approach to patient involvement, according to Karin Strube.
currently, patient participation is largely voluntary and unstructured.Strube highlights the necessity for dedicated funding programs and overall professionalization, supported by sustainable financing and accompanying research. This push aligns with the goals of the National Decade Against Cancer (NDK), which has identified patient involvement and the right to have a say as a central tenet. The NDK has already seen patients becoming active research partners.
The benefits of patient participation extend to the quality of research itself. scientific evidence demonstrates that incorporating the patient perspective leads to better research outcomes. Strube encourages greater involvement, stating, “It would be great if more people got involved as patient representatives or in research.”
Further information on patient demands for reform in German oncology can be found in the document “Vision Zero: What does oncology really need today and in the future? Patients’ demands for reform from German politics.” https://vision-zero-oncology.de/media/pdfs/25_11_Forderungen_PatientInnenvertretung_Digital.pdf
[Image of cancer care network with the caption: Cancer care: More networks, more collaboration. photo: Pharma Facts]