Pediatric cancer research is complex, and researchers cannot tackle the plethora of research priorities that exist on their own. In fact, there is plenty of evidence suggesting that patient engagement from the outset of study development can and has led to improved research quality and impact. This is possible by helping refine research questions, providing guidance on patient outcomes of importance, informing recruitment strategies, and advising on knowledge mobilization strategies.

The ACCESS Network is the direct result of a partnership between patient advocates and healthcare professionals to voice and address growing concerns in the pediatric cancer community in Canada. However, questions remain regarding how to effectively engage marginalized and vulnerable populations, such as pediatric patients, in research on an on-going basis.

This project aims to leverage the momentum of the ACCESS Network and mobilize state-of-the-art knowledge on inclusive Participatory Action Research to engage youths living with cancer.

The goals for this project are threefold:

• Research-for-Action: Empower youths to partner with scientists to understand their hopes and aspirations for cancer care and prevention.
• Research-for-Science: Advance methods of inclusive participatory research designs.
• Research-for-Training: Support capacity-building for participatory action research among the next generation of youths and pediatric cancer scientists.

This project is designed to align with youths’ priorities, direct their passions towards outcome-based projects, build a community of young advocates shaping and directing research focus, and uplift science communication ambassadors the community trusts.

This project is likely to further develop the capacity to conduct participatory action research in youths with cancer by offering tangible examples and key strategies for their engagement in pediatric cancer research.