SwissPedNet as an organization wants to increase the involvement of patients/ parents in research.
We are still in a planning phase and need to find a way to proceed. One idea is to build up a database with patients and/ or parents who are willing to become part of a group and construct something together. More information will follow.
In Europe there are already succesful initiatives like the Young Persons Advisory Groups (YPAGs). YPAGs consist of children and young people with an interest in improving health research. Some members are pateints, some are related to patients, and several have participated in clinical trials.