Low participation in medical trials puts millions of young people at risk | Health

Millions of young people risk missing out on new treatments for health problems and having to use dangerous, ineffective or inappropriate medicines because very few young people participate in medical research, experts warn.

Data analysis by the Guardian reveals that members of Generation Z – those born between the late 1990s and early 2000s – are significantly underrepresented in clinical trials and health studies.

People aged 18 to 24 make up 8% of the English population, but only 4.4% of those involved in medical research.

Although less affected by life-threatening illnesses such as cancer and heart disease, young adults still face a significant burden of morbidity. Nearly half – 45% – of people aged 24 or younger suffer from a long-term physical or mental health problem.

Experts said the lack of young people participating in research would have a serious impact on their physical and mental health for decades unless urgent action was taken to reverse the trend.

Kirsty Blenkins, deputy chief executive of the Youth Health Association, said adults aged 24 and under faced “a distinct set of health challenges” which were often “shaped by major life transitions, social pressures and inequalities” which impacted on their physical and mental wellbeing.

Their absence in clinical and health research projects has serious consequences, she added.

“Treatments and interventions may be designed and tested primarily on older people, meaning they are not always safe, effective, or appropriate for younger populations. This can lead to poorer health outcomes, delayed diagnosis, and reduced trust or engagement in health systems.”

Several factors likely explain the lack of Gen Zers in studies, Blenkins said. “Barriers to participation include limited awareness of research opportunities, lack of targeted recruitment, concerns about confidentiality, and a research culture rarely designed with or for young adults.

“Increased representation requires more inclusive research design, involving young people from the start, making participation accessible and relevant, and embedding youth engagement as standard practice throughout the research system.

Figures from the National Institute for Health and Care Research (NIHR) analyzed by the Guardian showed adults aged 18 to 24 were significantly under-represented in health research.

Between April 2021 and March 2024, 32,879 adults aged 18 to 24 took part in 5,042 studies supported by the NIHR research network, which equates to only around seven young people per study.

This age group represents 8% of the English population, but only 4.4% of participants in NIHR research network projects. In contrast, people aged 85 or over represent only 2% of the population, but 32,031 people signed up for research over three years until 2024, or 4.2% of participants.

“Young people often don’t realize that they can and should participate in health research,” said Dr Esther Mukuka, director of research inclusion at the NIHR. “When people think of research, they often imagine experimental treatments for serious diseases like cancer, but it’s much more than that.

“Research is shaping the way we manage everyday illnesses like diabetes and the way mental health support is offered in the NHS. Generation Z faces their own health challenges. They also engage differently with the health system.”

Long-term health problems affecting young adults include diabetes, obesity, asthma, autism, learning difficulties, epilepsy, eating disorders and a range of other mental health problems.

“If this group does not participate in research, the treatments and services developed will not reflect their needs,” Mukuka said. “Scientific discoveries are advancing further and faster than ever before. And it’s clear that tomorrow’s treatments will be very different from what we understand today.

“Health and care systems must evolve with society. It is therefore crucial that young people participate in research now. Without their contribution, future treatments will not be as representative or effective as they should be.”

An NIHR campaign aims to encourage more people to take part in health and care research. Its UK-wide volunteer register makes it easier to take part in studies, connecting people with opportunities that match their health concerns and interests.

Anyone can participate in research, whether or not they have a health problem. Some studies seek to study people without the condition, so that researchers can compare them to those who have it.

“Getting involved can be very simple, including filling out a quick survey or giving a saliva sample,” Mukuka said. “And if you don’t have a health problem, consider taking part anyway. You can still help shape the NHS of tomorrow. Think of it as an investment in the kind of care you would want for yourself, your friends and your family.”

Dr Wendy Macdowall, a health research expert at the London School of Hygiene & Tropical Medicine, said women and ethnic minorities were also under-represented in research.

“To reduce inequalities, it is not enough to know whether interventions ‘work.’ We also need to know whether particular groups of people experience them differently.”

“Understanding how different groups experience interventions is essential so that practitioners can make informed decisions about their adoption in specific subgroups and to ensure that interventions do not inadvertently produce or exacerbate inequities.” »