Patient:innenpartizipation in der klinisch-ethischen Forschung

The involvement of patients in research is increasingly part of research projects on ethical aspects of cancer care. In this article, we present experiences with participatory research in clinical-ethical studies.

Research project 1: Supporting the decisional capacity of patients with advanced cancers of the lung, liver, or esophagus. Participatory research elements include the involvement of (former) cancer patients in the naming of requirements for decision-making capacity and the prioritization of information that cancer patients should receive in addition to the informed consent discussion. Research project 2: Development of measures to support sedation in the last phase of life. Participatory research elements included support regarding the review of the literature and the development and revision of information materials on sedation in the last phase of life. The development of information material on sedation and the reference to other measures of aid in dying is influenced by the involvement of the participation group.

Participatory elements can be implemented in clinical-ethical research projects, but barriers were identified with regard to the patients’ state of health, the expertise required for the tasks at hand, and challenges in designing a continuous joint process. Future studies should examine not only the desired effects but also the risks of the participatory research process, such as, for example, instrumentalization of the participation group.