Chronic diseases are on the rise in young people, but experts say gaps in medical research are limiting progress on prevention breakthroughs.

Across Australia and globally, younger generations are underrepresented in health research. It means the data that shapes medical guidelines, treatments, and policies often doesn't reflect their needs.

Why is this the case, and how can we fix it to build a fair and robust health system that works for future generations?

Today, we're unpacking the context behind this research gap, the consequences for young Australians, and the initiatives working to close it.

Just before we dive in, a quick note: today's newsletter is sponsored by University of Sydney, but this newsletter has gone through our normal editorial process.

When it comes to health research, young people are often treated as an afterthought. As a result, many chronic diseases that begin in adolescence or early adulthood often go undetected or misdiagnosed – simply because they haven’t been studied enough in younger populations.

Two major systematic reviews examined 141 studies across 41 countries involving more than 34,000 adolescents. They found that youth engagement in prevention research is rare, poorly evaluated, and rarely translated into policy.

Mental health conditions, autoimmune disorders, and metabolic diseases can take years to diagnose properly when research focuses primarily on older adults.

For example, endometriosis affects at least one in nine women and often begins in adolescence. A lack of comprehensive research meant so little was known about the condition, resulting in generations of women whose endo symptoms were dismissed as “bad periods”.

These awareness and data gaps have left patients waiting an average of seven to ten years for a diagnosis. Only after sustained advocacy and increased dialogue in recent years has endometriosis become part of the national conversation, leading to a surge in diagnosis rates and better treatment pathways.

Endometriosis acts as a blueprint for what happens when a major portion of the population is excluded from health research: conditions persist, patients suffer undiagnosed and untreated, because their experiences are not included or understood in the data.

When young people have no say in what gets researched or how studies are designed, the resulting data often misses what actually matters to their lives.

While young people may not be living with disease or chronic conditions now, that doesn’t mean their future is risk-free.

Many disease risk factors take root during early adulthood. Eating patterns, physical activity levels, stress management, and mental wellbeing established in your teens and twenties can determine your health outcomes decades later.

To stay healthy, experts say young people need access to systems focused on prevention. For example, supportive environments, access to healthy and affordable food, safe spaces to be active, and systems that support their mental health.

Creating those spaces requires better engagement between researchers and young people.

Launched by researchers at the University of Sydney, the Health Hive is designed to empower young people to play meaningful roles in research about their health.

From sharing ideas and feedback, collaboration to independent projects, the platform provides young people with the tools and resources to have a say in the health conversations and decisions impacting them.

The project began with the establishment of the Health Advisory Panel for Youth at the University of Sydney (HAPYUS) in 2021.

Over the course of a year, researchers worked with a cohort of young people to guide adolescent health research. The panel found growing evidence to suggest youth health outcomes could be improved “through interventions that are targeted and youth-specific, for example, using youth-relevant language, technology, and motivational cues.”

The panel worked with researchers on projects to prevent chronic diseases in young people, according to findings published in BMC Public Health.

The team consulted more than 500 young Australians to understand how young people wanted to be engaged in research.

“We brainstormed health issues from our own experiences and other research… We helped develop and test programs to support healthy behaviours in young people [and] used scientific and public events to present our findings.”

The model has since trained 32 young people, some of whom have become co-authors on papers published in prestigious journals, including The Lancet Child & Adolescent Health and The Medical Journal of Australia.

And it’s only the beginning. The Health Hive recently launched Australia's first free online course for young people to upskill in public health research and advocacy at Parliament House, Canberra. Plans are underway to expand the platform through an Opportunities Hub and Community of Learners, partnering with organisations to grow the resource and create more pathways for youth involvement.

The youth advisors hope other young people will continue to “learn from our experiences and feel inspired to become active contributors in projects for meaningful change in the lives of young people.”

When young people help decide what gets studied and how these studies are designed, research becomes more relevant to their actual lives. That means better data, more accurate diagnoses, and health policies that reflect the needs of younger generations.

The changing conversation around endometriosis shows what’s possible. Closing research gaps builds a more representative system that benefits people at every life stage.

Projects like the Health Hive represent a shift in how we think about health research. Instead of waiting for young people to age into chronic disease, the project focuses on prevention and early intervention, guided by the people who will be most affected by the outcomes.

Meet the project changing the way young Australians shape their health

The Health Hive gives you the tools, confidence, and community to actually influence research that affects your life. It includes a free entry-level online course created with young people: “Foundations in Public Health Research & Advocacy for Young People”

Learners receive a certificate and digital badge upon completion.

What is it? A space where young Aussies can shape the research that affects their lives – from mental health to healthy eating and everything in between and find opportunities to get involved.

What’s it about? Making sure young voices aren’t just included, but driving the conversation.

Because no one knows what young people need to stay healthy better than, well, young people.

The Health Hive is funded by an Australian Government Medical Research Futures Fund Grant and supported by the Heart Foundation.