German Centers for Health Research support declaration on patient participation of the Health Research Forum

How cultural change can succeed

Patients can participate in medical research as active partners. Researchers should consider their needs and their unique expertise in the research process, as it is a valuable resource. The Health Research Forum published a statement on patient participation and calls for it to become the standard for patient-centered health research.

In the Health Research Forum, 20 experts and patient representatives developed a roadmap to strengthen and further establish patient-oriented health research in Germany. The Forum has now published a statement on the results of this discourse, on which the German Centers for Health Research (DZG) also collaborated. The paper discusses the goals of active patient participation and the opportunities it offers for medical research. It focuses on the partnership between researchers and patients and shows how this can be strengthened. The goal is to jointly shape health research in such a way that it benefits from the individual experiences of patients. The exchange with patients can help to align research with their needs. In addition, patients can use their personal experience to support the transfer of results into practice and increase the transparency and acceptance of research in society. The Health Research Forum calls for the participation of patients in the research process to be established as a standard.

Patient participation requires cultural change

Research funders and patient associations increasingly demand active participation of patients. In Germany, patient participation is already common practice in some research areas, while others have only begun to develop and implement participation options in recent years. For patient participation to succeed, it requires a change in culture among all stakeholders as well as structural changes at many levels. The current paper of the Forum for Health Research specifically identifies these, such as strengthening the competencies of researchers and patients for participation formats, integrating patient participation continuously and in the long term into the research process, and providing sufficient financial and human resources.

Measures of the DZG

To better involve patients in the research process in Germany, the German Centers for Health Research will implement the following measures:

  • Patients will be involved in advisory boards of the DZG to discuss research strategies and directions with the management.
  • Patients will be specifically informed about data-rich research and meaningfully involved in the research process.
  • Suggestions and wishes of patients are taken up, for example the establishment of study search portals.
  • Formats are developed in which young scientists get to know the patient's perspective.

DZG provide online information on patient participation

The DZG website now provides detailed information and background information on the topic of patient participation (in German). Researchers and patients provide insights into their experiences and how they and science benefit from cooperation. In addition, interested parties can find information on how they can participate in research at the DZG.

Further information

About the Health Research Forum
The Health Research Forum intends to facilitate cross-organizational coordination between the players in biomedical research in Germany, so that patients can benefit more quickly from new research results in the future. The Forum is made up of the top representatives of the German research organizations in the field of health research and the health care industry, including the German Centers for Health Research. The Health Research Forum (in German) was established in 2015 on the initiative of the German Federal Ministry of Education and Research.

About the German Centers for Health Research
The six German Centers for Health Research (DZG) to date were initiated by the BMBF to better understand, treat and prevent common diseases such as cancer, diabetes, lung diseases, cardiovascular diseases, neurodegenerative diseases, and infectious diseases. Within the DZG, basic researchers and clinicians collaborate to bring scientific results to patients more quickly.

Throughout Germany, 90 research institutions (universities, university hospitals, and non-university research institutions) participate in the DZG. Some DZGs are also connected with other external partner institutions.

The DZG are funded 90 percent by the federal government and 10 percent by those federal states where their member institutions are located.

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