Community representatives on paediatric and adolescent Trial Steering Committees (TSC) are seldom, if ever, young people. Some Penta clinical trials ask whether there would be a way to address this, and during 2022 a pilot was developed to support young people to be active TSC members on four global clinical trials. We currently have four young people recruited from Uganda and South Africa working in pairs as members of the Trial Steering Committee for D3, BREATHER Plus, LATA and SHEILD.
The model recruits’ pairs of young people who have previous experience of paediatric healthcare and research to be Youth representatives on TSCs. We have developed a modular foundation training programme to begin to build the young people’s knowledge and understanding. They then participate in a year-long engagement programme to follow their trials and deepen their understanding. The aim is that through this process they will feel able to fully engage in the highly scientific annual TSC meetings.
Additionally to this, we are working with the Chairs of the TSC’s and the Trial Management Teams to explore ways to ensure the depth of discussion needed can occur at these meetings, but that it is done in an accessible and inclusive way so that everyone can understand and participate.
For more information about YTB groups or to discuss supporting in setting up this model in your research, please contact: network@pentafoundation.org