We know that young adulthood is typically a period of major transitions: college, careers, financial independence, moving, relationships, and changing healthcare providers. For young adults living with chronic or rare health conditions, those changes can make managing health — and participating in research — even more complicated.
A recent roundtable of young adult patients, researchers, healthcare providers, and industry representatives explored why young adults remain underrepresented in clinical trials.
There’s no single, agreed-upon definition of what a young adult is in medical research. The roundtable focuses on ages 18 to 35, but clinical trial results may combine younger adults with much older participants in broad age groups — which can pose a problem. An 18-year-old navigating a new diagnosis or transitioning out of pediatric care can have much different experiences from a 60-year-old participant.
Without age-specific data, it can be difficult for researchers to understand how treatments affect young adults.
Several factors can influence a young adult’s participation in clinical research, including:
RELATED: Clinical Trials: What Black People Need to Know
The transition from parental consent to making healthcare decisions on your own can be challenging for many young adults.
Informed consent documents can be long and filled with complicated medical language that can be difficult to interpret. You may also have to undergo several tests to confirm your eligibility to participate in a clinical trial.
While all of this may seem intimidating, you don’t have to go through it all alone. If you want support, a family member, partner, friends, or another person you trust may be able to help you understand your options and think through your decision.
To increase participation of young adults in clinical trials, researchers should also consider features such as:
These changes aren’t about giving young adults special treatment. Instead, they recognize that a one-size-fits-all approach clinical trials may leave important experiences and perspectives out.
Young Black adults can face the same life-stage barriers identified in the roundtable discussion, along with longstanding barriers that can affect clinical trial participation, medical mistrust, limited access to specialty care, and practical challenges like transportation.
A young adult’s age is just one part of their experience in medical research. Researchers need to also consider accounting for how the intersection of race, culture, access, and social circumstances that shape who can participate.
Better representation of young adults in clinical research can reflect both the diversity within young adulthood and the diversity of the communities affected by the health condition.
RELATED: How Black Clinical Trial Participation Can End Health Care Disparities
Young adults shouldn’t have to choose between participating in medical research and managing school, work, finances, relationships, and major healthcare transitions. The roundtable’s message is that young adults should be included not just as participants, but as partners in designing better trials. When young adults have a seat at the table, clinical trials may be better equipped to answer the questions that matter most to their lives.
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