One of our most important strategic objectives is to increase the involvement of patients and the public (PPI) in academic clinical research. By actively helping to shape the goals, design, and evaluation of research projects, patients and representatives of the public can play a role in improving the appropriateness, relevance, and credibility of clinical research – thus furthering the dialogue between the research community and those affected by research.
See the SCTO's informational PPI video >>>
SwissPedNet aims to increase the involvement of patients and parents in clinical research.
Key to this new orientation are patients and parents themselves: We are looking for patients and parents who are willing to actively participate and jointly develop the procedures for greater involvement. We are currently in a planning phase and are examining the procedure.
Successful initiatives such as the Young Persons Advisory Groups (YPAGs) already exist at European level. The YPAGs are composed of children and young people who have an interest in improving health research. Members include patients, relatives or people who have participated in clinical trials.
As the voices of children, young people and their families are a pivotal part of the innovative approach of the European project "Conect4children" (c4c), c4c has setup a database to gather information on patients, caregivers, patients organizations and/ or YPAGs of rare/ pediatric diseases willing to act as experts providing advice when required.
As a member of this pool of patient/ YPAG representatives, participants will be offered the proper training and information regarding their involvement in the proposed activities when necessary.
We encourage patients and their families to get involved in these c4c activities. Some good examples of activities in which patients will be involved include protocol revision and meetings to review the patients’ information addressed to the participants of the trials. The active participation of children, young people and their carers is one of the key objectives of the project.
If you wish (or know someone who would wish) to be part of the c4c pool of patients representatives, you can find out more by following the instructions here >>>.