15 Nov, 2022
The Penta Youth Trials Board (YTB) is made up of young people aged between 15 – 19 from South Africa, Uganda, Zimbabwe and the UK. The YTBs ensure that children and young people who experience a health condition, can participate in the decision-making of clinical trials relating to that condition. The YTB groups meet quarterly to take part in activities relating to several trials, working alongside the trial teams to develop activities. The meetings are run by YTB Coordinators and can have guest facilitators too.
As part of the YTB work, a session was held earlier this month with the YTB in the UK. They started the morning by watching a presentation from Dr Sarah Fidler on a cure for HIV from the CHIVA Conference earlier this year, with the wider group of Youth Committee Members, a committee run by CHIVA. This presentation sparked lots of questions about the role of different types of clinical trials and research in supporting clinicians to find out more information. In particular, how does one measure how long antiretroviral medication stays in your body and how does this impact what we know about adherence?
Two new members were also welcomed and trained during the meeting. We went over what a clinical trial is, how they work, who is involved in running a trial and how young people are recruited and studied in trials. We also covered key information about HIV such as its life cycle, the different classes of medication and what they do and how HIV is treated. YTB Members also shared with the new members their experiences of the trials they have been a part of (D3, BREATHER Plus, ODYSSEY, LATA). As well as activities they have been involved in at Penta ID Meeting (PIM) and AIDS2022.
We then moved onto an activity to review a video that Penta is working on, which is focusing on Pharmacokinetic (PK) trials. The group gave some feedback on the video and also shared what they learned from it. The video sets out to explain to young people what a PK Day is and how it works. This knowledge supported the group to understand the science behind their reflections from Sarah’s session and using this, they later fed back to the group the answers to questions from the morning.
Ending the day, we reviewed the youth version of Quality Standards for involvement of young people in research. The group shared their insights into how these would help them to understand how they should be engaged in research and what would make them feel safe and valued.
Written by Mercy Shibemba, Youth Participation and Engagement Consultant
Photo by FatCamera from Getty Images Signature