Patients as Researchers in the Medicine

Patients are experts by experience. Because of their knowledge of their own life situation and experiences with disease and therapy, they possess valuable knowledge that is not available to scientists to this extent. This is precisely what enables them to play an active role in research. While the role of patients in their own treatment, but also in the planning of medical services, is increasingly seen as important, patients are still mostly "research objects" in research and not active participants. The new research project "PART", which is now being launched at the University Medical Center Rostock in the Clinic for Forensic Psychiatry (KFP) and the Clinic for Psychosomatic Medicine and Psychotherapy together with the German Center for Neurodegenerative Diseases (DZNE), aims to change this. The Robert Bosch Foundation, as a non-profit corporation, is funding the project for a period of three years.

The project "PART: Patient Advisory Council for Participatory Research" involves the active involvement of people with lived experience of a disease in the research process to improve quality, impact and relevance. This process is designed as a partnership between all stakeholders. Structures for active patient involvement in research will be created to assist in, for example, prioritizing research topics and objectives, creating information materials on research projects, recruiting patients, and interpreting and disseminating research results. Leading the PART proposal were Dr. Jack Tomlin (KFP) and Dr. Olga Klein (DZNE). "We are interested in organizing medical research together with people who know and can describe their own lifeworld in detail and giving them the active role in the research process. This is innovative and has hardly been implemented in Germany so far," says Prof. Dr. Birgit Völlm, Director of the Clinic for Forensic Psychiatry Rostock.
"Our focus is clinical dementia research with the aim of improving the early diagnosis and treatment of dementia, actively involving patients and their caregivers. We have had very good experience with this in clinical studies and therefore want to make the active involvement of those affected more sustainable," explains Prof. Dr. Stefan Teipel, Head of Clinical Research at the DZNE Rostock/Greifswald site and Head of the Section for Gerontopsychosomatics and Dementia-related Diseases at Rostock University Medical Center.
With the foundation and realization of a patient and public body "PART- Advisory Board", patients, relatives, researchers, patient representatives and organizations and other relevant stakeholders are brought together.

The project consists of three phases. The first year focuses on establishing the PART Advisory Board organizational structure, developing key documents, and raising awareness among the public and project participants. The second phase includes the establishment of specific PART advisory boards for individual clinical areas. In the third phase, the number of projects will be increased and guidelines for increased patient participation in research will be developed. This process will receive ongoing scientific support to identify barriers and supporting factors.