Meet the National Children’s Cancer Service (NCCS) YPAG, a dynamic group of young people aged 12-29 who are taking an active role in shaping cancer research and services for young patients across Ireland. This isn’t just another advisory group—it’s a collective of young individuals, many of whom are either current or former cancer patients, who are using their personal experiences and unique perspectives to ensure that the research and services offered to young people with cancer are truly relevant to their needs.
Who Are the YPAG Members?
The NCCS YPAG is made up of a diverse group of young people from across Ireland who are united by their desire to make a difference in cancer care and research. These members aren’t just patients—they are individuals who are passionate about research, medicine, and science, and they bring valuable insights from their own experiences. Whether they’re giving feedback on clinical trial designs or patient information sheets, their goal is to make cancer research more youth-friendly and effective.
What makes this YPAG unique is the fact that it directly involves young people who have lived through cancer or are actively undergoing treatment. They know first-hand what it’s like to navigate the healthcare system, making their contributions deeply personal and meaningful. These young people are not only helping to shape research but are also developing skills that will benefit them in the future, such as teamwork, critical thinking, and public speaking.
What Does the NCCS YPAG Do?
The NCCS YPAG is involved in a wide range of activities that directly influence how cancer research is conducted and how services are developed for young patients. They work alongside researchers and clinicians to provide input on everything from refining research questions to helping design more accessible patient materials. This group doesn’t just stop at research, though—they’re also actively engaged in improving the broader cancer support services available to young people.
Some of the key activities members can take part in include:
- Reviewing patient information sheets and consent forms
Making sure that these documents are clear, accessible, and understandable for young people. - Giving input on clinical trial designs
Advising on how studies can be made more youth-friendly, such as by minimizing disruptions to school and social lives. - Improving cancer support services
Working with the NCCS and Adolescent and Young Adult (AYA) teams to ensure that cancer services are responsive to the needs of young people. - Public engagement
Members are encouraged to present at academic conferences, write blog posts, and attend events to promote the group’s work and the importance of youth involvement in cancer research.
One of the most exciting aspects of this group is that they make sure to have fun along the way. Whether it’s through icebreakers, energizer activities, or simply bonding over shared experiences, the NCCS YPAG is as much about creating a supportive community as it is about making an impact on cancer research.
A Voice in Cancer Research
The NCCS YPAG isn’t just a voice for young people with cancer—it’s a direct partner in shaping the future of cancer research in Ireland. By collaborating with the researchers and clinicians at the NCCS, this group ensures that the perspectives of young cancer patients are front and center when new studies are being developed. Researchers often work on projects related to children and young people without fully understanding their needs or experiences. The YPAG changes that by advising on everything from how to recruit young participants to how best to share research findings with youth.
This group’s contributions don’t just help individual studies—they’re driving systemic change in how cancer services are designed for young people. The feedback they provide helps challenge established patterns of thinking, ensuring that cancer care and research are more empathetic, responsive, and impactful.
Training and Empowerment
One of the cornerstones of the NCCS YPAG is its focus on empowering its members through training. The facilitators ensure that every member has the knowledge and skills they need to fully participate in research discussions. Training topics range from understanding cancer and clinical trials to learning about ethical research and health service development. This not only prepares YPAG members to give informed feedback but also equips them with skills they can carry into other areas of their lives.
Members are also given opportunities to engage in public speaking, attend conferences, and write about their experiences. This emphasis on personal growth is key to the YPAG’s mission: it’s not just about improving cancer research—it’s about empowering the next generation of advocates, researchers, and healthcare professionals.
Inclusivity and Representation
The NCCS YPAG is committed to making sure the group represents a diverse cross-section of Ireland’s young cancer patients. Members come from a variety of backgrounds, ensuring a mix of diagnoses, geographic locations, socioeconomic statuses, and ethnicities. This diversity is crucial to ensuring that the feedback and insights the group provides are as comprehensive and representative as possible.
The facilitators also understand the importance of creating an environment where every member feels valued and respected. Whether it’s in-person meetings in Dublin or virtual gatherings via Zoom, every member’s voice is heard, and their contributions are treated with the seriousness they deserve.
A Collaborative Future
The NCCS YPAG is more than just a group—it’s a movement toward better, more inclusive cancer care for young people. By working directly with researchers, this group is helping to ensure that cancer studies are not only scientifically sound but also relevant and respectful of the unique needs of young patients. Their work is changing the landscape of pediatric and adolescent cancer research in Ireland, and they are setting a new standard for how young people can—and should—be involved in shaping their own healthcare.
If you’re a young person with experience of cancer and want to make a real difference, this is your chance. Joining the NCCS YPAG offers not just the opportunity to influence cancer research but also the chance to learn, grow, and have your voice heard in a meaningful way.
YPAG in the London Assembly
The European YPAG network
