Youth Belong at the Heart of Pediatric Cancer Research

When we think about research, we often imagine lab coats, data graphs, and scientific jargon written in dense protocols. What we rarely picture is a teenager who has survived cancer explaining to researchers what healing truly feels like, or a youth reminding us that comfort sometimes begins with simple kind words. Yet, it is voices like these that can make the science of pediatric cancer more humane, more relevant, and ultimately more impactful.

“I was in a refugee camp when I got sick with cancer during the pandemic,” recalls Anoushka Mabika, a young cancer survivor and patient partner. “Because of the restrictions, my family couldn’t be with me in the hospital. When I was told I had cancer in my brain, I was alone and terrified, with no one to hold my hand. It was a painful experience I don’t want anyone to go through. Now, I’m a mentor to other kids with cancer because it helps them see a future for themselves. I wish I had known there were others like me back then – people who understood what I was going through.”

Anoushka’s story is a reminder that research is not only about the science of disease but also about the humanity of healing. The lived experiences of young people like her offer perspectives that no dataset can capture and can reveal gaps that researchers may overlook – whether it’s how treatment schedules disrupt friendships, or how a hospital’s environment affects motivation and hope. These perspectives have the power to transform how research and care are imagined, designed, and conducted.

Too often, children and teenagers are treated as bystanders in conversations about their own health. Doctors talk to parents. Researchers design studies about young people, but rarely with them. Yet no one understands the lived reality of illness better than those who have endured it. Involving youth as true partners – not subjects or participants – can shift research from being about patients to being for and with them. When youth are engaged early and meaningfully, they help ensure that research questions, interventions and outcomes reflect what truly matters to children and youth living with cancer.

“They carry both the scars and the wisdom of experience – and when they are invited into research spaces, they don’t just participate; they help transform them,” says Ghislaine Rouly, advocate and 3 cancer survivor, patient partner and Co-Director of Canada Research Chair in Partnership with Patients and Communities.

This shift – from studying youth to partnering with them – redefines what meaningful research looks like. Engaging young people in research is not an act of tokenism; it is an essential practice that strengthens scientific quality, relevance and trust. “However, to meaningfully engage youth in research, you must create a “third space,” – a meeting ground where the world of medicine and the world of lived experience stand on equal footing”, says Gwenvaël Ballu – Project Coordinator. It means stepping out of boardrooms and into campfires, bunk beds, and kitchen-table conversations. It means listening to learn.

“When Persons With Lived Experience are invited into the room, the research itself begins to change,” says Jacob Randell, Person With Lived Experience and patient partner. “It becomes less about abstract outcomes and more about what truly matters to patients and families.” Small insights from young people can lead to profound changes – a hospital room redesigned to ease fear, or a research question reshaped to include emotional recovery as an outcome alongside survival.

The ACCESS Network is a direct result of advocacy by patients and families to address growing concerns in the pediatric cancer community. Building on this foundation, the Advancing Inclusive Youth-Led Research: Participatory Action Research project aims to mobilize the latest knowledge on inclusive participatory action research to engage young people living with cancer as co-researchers and changemakers. The project seeks to align with youth priorities and passions, build a community of young patient partners shaping research directions, support projects prioritised by patients, and empower young science communicators. By involving youth directly, this initiative strengthens Canada’s capacity to conduct inclusive, participatory research in pediatric oncology and ensures that science reflects the realities of those it serves.

To support researchers and clinicians wishing to meaningfully integrate young people into their research, the project team has developed a Toolbox for Working With Young People in Research. This resource offers practical guidance, examples, and templates to help researchers, clinicians, and patient partners begin or deepen their collaboration with youth. It serves as a starting point for creating projects that do not only study youth experiences but are shaped by them.

Dr. Antoine Boivin, family physician, Canada Research Chair in Partnership with Patients and Communities, and co-lead of this initiative, shared “I have witnessed a young cancer survivor stand in front of a room of senior scientists and, without a single note, teach them what it means to live with cancer. Their involvement changes the very questions we ask – and the futures we imagine.”

Youth engagement is not the “soft” side of science – it is the soul of it. Because sometimes, the most important expertise does not come from textbooks, but from the determination of those who have lived the story and are ready to write the next chapter.