Involvement of patients and research participants in ethics review processes


The active involvement of patients in clinical research is essential and its added value is undisputed. The inclusion of the experience of living with illness and active participation in the evaluation of research applications is important and helpful. Since 2022, patient representatives have been legally required within the research ethics commission. A working group of the respective patient representatives of the ethics committees has now been formed within swissethics, which is coordinated by Annette Magnin, managing director of the Cantonal Ethics Committee Zurich. This group has developed a first statement on the basic principles of these representations and their practical implementation for research. The document is available in English (link) and serves as a basis for the current implementation as well as a starting point for future developments.