Patient involvement creates health for all

Patients play an increasingly important role in research. Their experiences and perspectives on living with a disease can provide valuable input to researchers. Actively involving patients in research not only builds trust but also adds relevance to research results.
"At the DZPG, experience experts are not only heard, but also have a guaranteed right to speak as equals."
Silke Lipinski, member of the Trialogical Board of the DZPG

The experience of mental illnesses and disorders is a valuable input for research – Silke Lipinski and Dr. Myriam Bea from the Trialogical Board (TZR) of the DZPG present insights.

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"The fact that the use of health data can save lives is not given enough attention."
Rudolf Hauke, Patient Advisory Board of DKFZ and DKTK

The value of health data for research – A dialogue between Prof. Martin Hrabě de Angelis and Rudolf Hauke from the Patient Advisory Board of the DKFZ and the DKTK.

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"We, the patients, are experts through our experience, which is a valuable resource."
Helga Rohra, Co-Chair of the DZNE Patient Advisory Board

Today, many researchers are calling for the patient's voice – Helga Rohra, Co-Chair of the DZNE Patient Advisory Board and Dr. Pippa Powell, member of the Scientific Advisory Board at the DZL, talk about their experiences.

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Clinical Trials
Clinical trials are essential in medical research to prevent, detect, and treat diseases more effectively. Patients who participate in a clinical trial make a valuable contribution to health research, have access to new treatments, and receive intensive care.
Patient Participation
Health research is undergoing a shift in thinking: There is a growing recognition that everyone benefits when patients are actively involved in the research process. The DZG offers various opportunities for this.

Aktive Patient:innenbeteiligung – wie der Kulturwandel gelingen kann

Es ist ein bislang einmaliger Prozess in der deutschen Gesundheitsforschung: 20 Expert:innen und Patient:innen haben zusammen einen Fahrplan erarbeitet, mit dem die aktive Patient:innenbeteiligung in der medizinischen Forschung systematisch ausgebaut werden soll.


It is a unique process in German health research: 20 experts and patients have worked together on a roadmap to systematically expand active patient participation in medical research.


Karin Seyffarth has type 1 diabetes. She is convinced that research can only progress if the patients themselves get involved. During her studies, she participated in two diabetes studies. She is now involved in the DZG's Patient Participation Working Group.

Joint research

Everyone living with a disease has their own experience. As a result, life can often be challenging , but at the same time, a unique perspective and expertise are developed through personal medical history. Health research is increasingly recognizing how valuable these experiences are for everyone involved. Therefore, there are many ways for patients to contribute their individual perspectives to research and actively shape the process.

Valuable input from patients

Patients can, for example, join research and patient advisory boards to help guide research. Together with scientists, they can also

  • formulate questions,
  • discuss and add their perspectives to scientific projects,
  • take part in workshops and
  • attend training courses.

This close exchange not only helps to align research with the priorities and needs of patients, but also strengthens the motivation of scientists. In addition, the personal experience of patients can

  • support the transfer of results into practice,
  • create transparency and
  • increase the acceptance of research in society.

In addition to these active forms of patient engagement, there is also the opportunity to provide health data for research purposes through participation in clinical trials and thereby support medical research.