22 Jan, 2024
For the past 6 years, Penta has run an initiative called the Youth Trial Boards (YTB), a platform for adolescents who are living with specific health conditions to actively participate and contribute to clinical trials and also become advocates for their health. These young people are given the opportunity to share their unique perspectives and provide valuable insights that can ultimately improve the effectiveness and relevance of clinical research. We sat down with a few young people currently involved in the SHIELD, D3 (Penta 21), LATA and Breather Plus trials and they shared their insights into Penta’s YTB.
Being part of the YTB goes beyond speaking with researchers and clinical trial staff, they create a strong network of support and understanding, sharing their experiences and providing emotional guidance to those who may be going through similar challenges. Additionally, they actively raise awareness about the importance of clinical trials and advocate for improved access and resources for young people. When asked, if being a YTB member has helped them in any way, one YTB member had this to say, “Being part of the YTB has helped me to help many young people who struggle to share their thoughts even with their friends but with the YTB they are able to reach out to me and talk to me and I can help them. They know that I am a YTB member and that I am working with hospitals and health centres. They feel comfortable with me because they know that I am living with HIV and they can ask me anything because I experience what they experience”
One common thread that ties these dynamic young people together is their transformation from passive participants to active partners in clinical trials. No longer sitting on the sidelines, YTB members are actively engaged in decision-making processes, bringing a fresh perspective that adds depth and relevance to clinical trials. The YTB is not just about participation, it’s a platform for personal and collective growth. Our YTB members unanimously expressed how being part of this initiative has not only enhanced their understanding of their health conditions but has also provided a sense of purpose. They have acquired essential skills, from effective communication to critical thinking, preparing them for a future where their voices matter.
“Being part of the YTB means I get to go to meetings with doctors and researchers and stand up in front of them and speak from my heart. It makes me happy because they give me their attention and in those moments I feel like the important one in the room is me and they want to hear what I have to say” stated one YTB member.
The Youth Trials Board is a testament to the power of collaboration, diversity, and the untapped potential within the youth. Penta’s commitment to empowering adolescents worldwide through this model is shaping the landscape of clinical trials, ensuring that the voices of the young are not only heard but also integral to the advancement of medical research. As we celebrate these young pioneers, let us look forward to a future where initiatives like YTB become the norm, creating a world where everyone’s voice is valued and included.
Visit our Youth Engagement page to know more about how Penta is the engaging young people involved in our clinical trials.