What is a Youth Trials Board?
A Youth Trials Board (YTB) is a model developed by Penta to train and support adolescents to be able to be active partners in research trials.
They are groups of young people aged between 15 – 19 years of age, living with a particular health condition that have been trained and are continuously supported to meaningfully participate in specific clinical trials.
Each group is made up of 9 young people from a specific country. Penta is currently running this model in: South African, Uganda, the UK and Zimbabwe. Hybrids of this model are being used in Kenya and have been used in Russia.
The history of Youth Trials Boards
This programme was piloted as a sub-study of ODYSSEY starting in 2017 being. It was informed by a literature review exploring youth engagement and participation models and refined via consultation with young adults from the UK. The draft model was tested and refined through consultation and collating the experiences of those involved at the four sites.
The model focuses on:
- Supporting young people to obtain the knowledge they need to understand research through a youth-friendly training programme
- Working closely with Trial Management Teams to located decision-making points in research and then creating youth-friendly materials and activities to support the YTB members to explore the area and have their input into the decision.
Active Youth Trials Boards
These groups are currently working with some or all of the following research: ODYSSEY, D3, BREATHER Plus, LATA and SHEILD.
Durban, South Africa
We have partnered with the Enhancing Care Foundation, a research unit based at King Edwards Hospital in Durban, South Africa since 2017.
Kampala, Uganda
The Kampala YTB is housed at MU-JHU Care LTD in partnership with Baylor College of Medicine Children’s Foundation and the Joint Clinical Research Centre. All three research centres have three YTB representatives on the group.
Harare, Zimbabwe
The Harare has been housed at the University of Zimbabwe Clinical Research Centre since 2018.
United Kingdom
The UK group is based at Chiva. This is the one YTB based with an NGO.
Examples of resources Youth Trials Boards have produced
LATA Recruitment videos
When asked how children and young people like to have their information presented, all YTB groups said through short videos. To this end, a video was made to compliment the LATA Patient Information Sheet, explaining the trial and answering the questions YTB members said they would want to know before joining this study. This video had the input of all YTB groups and has been translated into 4 languages Isizulu, Shona, Luganda and Swahili
ODYSSEY findings videos
We have worked with YTB groups in the UK and South Africa to create short videos for Instagram, Facebook and YouTube to communicate key messages about the results from ODYSSEY.
These were created in collaboration with influencers living with HIV and to reflect that young people now access a significant amount of information through social media platforms.
Breather Plus PIS
YTB Zimbabwe worked with a graphic designer to produce a youth-friendly patient information sheet that explained the clinical trial BREATHER Plus through infographics. The process took in total around 9 months from concept to competition and has been translated into four additional languages and used for recruitment to this study.
Risk of Neural Tube Defects in feotuses
Although now disproven to cause Neural Tube defects in foetuses, in the second year of the ODYSSEY study, this was a potential side effect of dolutegravir that trial participants needed to be informed about. YTB UK created this simple set of infographics to explain the possible risk.
For more information about YTB groups or to discuss supporting in setting up this model in your research, please contact: Lungile Jafta