Having young people involved in Penta’s work is extremely important and impactful. We do this in a meaningful and ethical way through the Youth Trial Boards. The model ensures children and young people growing up with HIV are able to participate in clinical trials with a clearer understanding of the process ahead. The opportunity to share and give input in clinical trials will in turn encourage them and their peers to be proactive and present in programs that can shape their future. Through this work, young people remain engaged in trials and shaping science that affects them, from conception through to disseminating results.
Penta Youth Trials Boards have been running and developing since 2017, working in South Africa, Uganda, Zimbabwe, UK, Russia. Young people between the ages of 15 and 19 living with HIV from diverse groups are recruited to be representatives. YTB members have worked on Patient Information, findings, explaining processes and advocacy (including engaging Ethics Committees). The model also uses short films, social media, videos, posters, infographics to disseminate trial information.
In 2022, young people will be representatives on Trial Steering Committees and deliver a co-developed training for trialists.