Patients and their relatives bring an important perspective to medical research. They know the challenges of a condition from their own experience and can help to refine research questions and ensure that studies and information materials are better tailored to patients’ needs.
Within the Network University Medicine (NUM), too, patient representatives are already involved in research projects and studies. The form and extent of this involvement may vary depending on the project.
The NUM is currently working to develop a site- and project-wide framework for patient involvement. The aim is to strengthen patient involvement in the long term and to establish common quality standards across the entire network.
Would you like to get involved?
A comprehensive programme of opportunities for participation in the NUM is currently still being developed. If you are interested in getting involved as a patient representative in medical research, you can find information and opportunities, for example, at the following organisations:
- Federal Ministry of Research, Technology and Space (BMFTR): Information on the importance of patient involvement in health research and on different forms of participation
- BMFTR’s collection of examples of patient involvement – practical examples from research projects in which patients were actively involved
- Information from the ‘National Decade Against Cancer’ initiative
- Many patient organisations also offer opportunities to get involved or to find out about ways to participate. For example, the Federal support community for self-help by People with Disabilities, Chronic Illnesses and their Relatives (BAG SELBSTHILFE) provides an overview of its member organisations.