Involving young people in clinical research might feel like a leap into the unknown for many researchers, but Penta’s experience shows that it is one of the most rewarding ways to improve the quality and relevance of a study. While there is often a worry about the logistics of engagement, the reality is that young people bring a level of clarity and practical insight that experts simply cannot replicate. By moving beyond the traditional model of research done ‘to’ or ‘for’ adolescents, Penta has embraced a collaborative approach where research is done ‘with’ and ‘by’ them. This shift treats young participants as partners whose lived experience is just as important as the clinical data being collected.
Penta’s Youth Trial Boards (YTBs) are the heart of this inclusive model. Operating in Uganda, Zimbabwe, South Africa and Kenya, these boards consist of young people aged 15 to 19 who are living with HIV. In HIV trials like ODYSSEY, D3, BREATHER Plus and LATA, YTB members have become essential partners in the research process. Building on the the real-world successes and lessons learned from these active boards, Penta developed the Quality Standards for Adolescent Participation in clinical research decision-making. This means the guidelines aren’t just theoretical they are a reflection of what actually works when you give young people a seat at the table.
The work of the YTBs is incredibly hands-on. They have been instrumental in co-creating the face of clinical trials, designing logos, recruitment videos and patient information materials that actually speak to their peers. By reviewing complex consent forms and trial protocols, they provide a necessary reality check, ensuring that the language used is accessible and the trial requirements are realistic for a young person’s daily life. This level of involvement doesn’t just make the materials look better, it directly improves recruitment and helps participants feel more respected and informed throughout the study.
“I feel almost tricked by patient information sheets, you open them up and see a wall of words on the back and front. Words that that don’t make sense. By working on the D3 poster, we were able to change that confusing language and make it simpler. It’s so much easier for everyone to understand now” YTB member, UK
The inclusion goes even further than trial design. A pilot project successfully integrated YTB members into Trial Steering Committees, the independent bodies that oversee trial safety and progress. Sitting alongside senior scientists and clinicians, these young advisors have challenged researchers to communicate more clearly and stay focused on the patient experience. While it requires a commitment to provide proper training and support, the payoff for researchers is a study that is more responsive, ethical and effective. Embracing this way of working ensures a more human-centered and successful future for paediatric research.