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Patient Involvement in Research

An important goal of the National Decade Against Cancer is to increase patient participation in cancer research. In order to improve patient care, clinics now regularly involve those affected, for example through patient advisory boards. To date, patients have not been included enough in research, but they are now increasingly involved.

Patient participation in research does not only mean that those affected participate in (clinical) studies and / or make the data collected in connection with their illness available for research purposes. It is also about the fact that those affected are involved in all phases of the research - that means from the formulation of the question to the utilization of the results. Your wishes, experiences and opinions should be heard and taken into account.

Benefit for everyone involved

Because both sides benefit from it. The researchers get to know a different perspective on their research field and gain valuable insights into the needs, worries and hardships of those for whose well-being they are researching. It is known from surveys that sometimes other things are important to patients than to scientists. For example, while researchers sometimes aim to improve known therapies in such a way that they enable those affected to live longer, the focus of patients is sometimes more on deepening knowledge or further developing existing therapies for the benefit of quality of life.

Conversely, the involvement in all phases of research benefits the patient. Their view of their disease, their experiences and also their wishes flow directly into the work of those who always want to achieve with their research that cancer diseases can be better understood and thus prevented more often and better cured.

Challenges for patient involvement

Patient participation in research is still in its infancy in Germany. In the field of basic research in particular, there has been practically no patient involvement to date. The background to this are reservations on both sides: Researchers are often skeptical of the extent to which those affected know enough about scientific work and research processes to be able to make a meaningful contribution to their work. Conversely, patients fear that they will only be taken seriously in research where they are essential - for example as study participants. Fears of contact on both sides must be reduced here. Patient academies such as EUPATI, the European Patient Academy, can be helpful for this: EUPATI is supported by patient organizations and is mainly active in the areas of training and further education. The aim is to develop patients' ability to understand and participate in medical research and development.

Patient involvement in practice

The German Cancer Research Center (DKFZ) in Heidelberg has taken a first step towards greater involvement of those affected in basic research: the “Cancer Research Patient Advisory Board” was founded there at the end of 2018. Through this advisory board, the perspective of patients is taken into account when developing the research strategy of the DKFZ and its clinical research networks.

The National Decade Against Cancer itself also sends a clear signal for more patient participation in research: In the Decade's strategy group, two patient representatives, Renate Pfeifer from the Federal Self-Help Working Group and Jan Geißler from Patvocates GmbH, sit at the table with equal rights. And patient representatives are also members with equal rights in the working groups of the strategy group. As part of the Decade Against Cancer, the BMBF has published a funding guideline for practice-changing clinical studies. In September, the submitted funding applications were assessed and 13 projects were selected for funding in the concept phase. Here, too, patient representatives with voting rights were involved in the panel of experts. And most importantly: Only applications were considered for funding that provided for extensive and serious patient participation in the research project.

Renate Pfeifer, BAG SELF-HELP

“The National Decade Against Cancer will be successful if it focuses on the patient perspective. For research, this means above all an orientation towards the complex realities of life of people with cancer and their relatives as well as patient-relevant endpoints. This in turn means that patients should not only be involved in the evaluation of new therapies or methods, but rather during their development. "