Cases of cancer in adolescents and young adults in Canada are increasing, with nearly 10,000 cases last year alone.

People between the ages of 15 and 39 have been referred to as cancer’s “lost tribe” and “forgotten generation,” as their unique needs and experiences have been largely overlooked and unaddressed in cancer research and care.

Adolescents and young adults are one of Canada’s top underserved cancer communities, according to the Canadian Cancer Society.

Because cancer is typically considered a disease of aging, most young people don’t anticipate a cancer diagnosis during what are the prime years of their lives. This developmental period is marked by key milestones, like pursuing education, establishing careers, exploring relationships and growing a family — all of which are significantly impacted by a diagnosis of cancer.

Emerging research suggests that cancer affects adolescents and young adults differently than children and older adults. Due to key biological and psychosocial differences, this cohort has poorer outcomes across the cancer trajectory. For example, adolescents and young adults often experience more physical symptoms, greater psychological distress and even worse overall survival compared to patients of other ages.

Yet, less than half of one per cent of all cancer research funding in Canada has been dedicated specifically to adolescent and young adult cancer, and this amount has not increased in almost 20 years.

Clearly, more research is urgently needed to improve outcomes for young cancer patients. But not just any research. What’s required is research in the areas that are most important to patients and their families.

Patient-driven research priorities

Studies have found that the research priorities of the scientific community are not necessarily what those with lived experience (for example, patients, caregivers and clinicians) find to be most important. For example, researchers and industry tend to prioritize pharmacological trials two to five times more frequently than patients, caregivers and clinicians do.

This mismatch in priorities contributes to what’s known as research waste and is one of the reasons for........

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