Be the Data: How Young Adults Can Shape the Future of Diabetes Care

Your Voice Matters!

Clinical research is critical for the advancement of technology, medications, and management strategies. 

Research shapes the future of diabetes care.

Every study helps scientists and clinicians understand what works and what doesn’t. When young adults aren’t included, new treatments, technologies, and behavioral interventions may not reflect real-world experiences — like using diabetes tech while juggling classes, work, and a social life.

The young adult experience is unique.

These are formative years, where college students and young adults are learning to manage diabetes on their own and establishing their own way of caring for themselves. As a Lancet editorial put it, “The launch into independent adulthood may be thought of as akin to early childhood — a ‘blank slate’ opportunity on which new adults establish new habits, behaviors, and communities they will carry forward throughout their adult lives.” (source: Lancet)

Young adults respond differently to interventions.

Sometimes, results between child and adult studies don’t align because young adults weren’t studied as in depth. For example, the Lancet editorial noted that studies on metformin for diabetes prevention found it effective for adults under 60, but not for youth. Yet none of the trials included people ages 19–25 — leaving a major gap in understanding.

Your involvement creates equity and representation.

When diverse young adults participate — across race, gender, income, and background — research becomes more inclusive and its findings more applicable to everyone, not just the small group that’s historically represented. Evidence-based recommendations truly are based on evidence, not just conjecture. 

Representation Matters — So Why Isn’t It Happening?

We know diabetes management isn’t “one size fits all,” yet much of diabetes research still centers on a narrow slice of PWDs. Certain groups — like pregnant people or those in a specific age range — might be excluded entirely. Others face barriers such as materials available only in English, lack of outreach, or inaccessible research centers.

Systemic issues like mistrust of the medical system, racism, socioeconomic disparities, implicit bias, and lack of culturally competent care have all contributed to underrepresentation in clinical trials.

A recent meta-analysis found that over the past 20 years, only 24% of participants in type 2 diabetes trials were BIPOC, and 85% of participants in type 1 diabetes technology trials were non-Hispanic white PWDs.
(Source: diaTribe)

With added attention to the need for diversity and cultural inclusion in scientific research, more emphasis is being placed on strategies to support diverse study recruitment such as: 

• proactive engaging in grassroots awareness
• providing resources to address barriers like offering childcare or transportation
• recruiting staff that represents the demographics
• developing culturally sensitive research materials.

Barriers to Participation

Even when people want to participate, obstacles can make it hard:

• Time, cost, and location. Clinical visits can take hours — difficult for those without paid time off. Some studies are only conducted in specific geographic areas, limiting the pool of available and interested participants. 
• Awareness. Many young adults aren’t told about studies they qualify for by their care team, especially when transitioning from pediatric to adult care, and knowing where to look or how to interpret study criteria isn’t always straightforward!
• Study criteria. Exclusion criteria, such as length of diagnosis, technology or medications used or not used, as well as age, health statuses and language, can make it challenging to find a study match. 
• Burnout and fear of change. Trying new devices or medications can feel overwhelming, especially when balancing other life stressors.

How to Get Involved

There are many ways to advocate for more inclusive, culturally competent diabetes research — and one of the most powerful is to get involved in research whenever you can.

Even with these aforementioned challenges, there are accessible ways to make your voice count in research:

• Thrivable – A patient insight platform that partners with companies and organizations to gather feedback on diabetes, mental health, and more. Most opportunities are paid online surveys, making participation easy and flexible.
• Breakthrough T1D and ClinicalTrials.gov – Both list ongoing clinical trials recruiting participants. You can filter by condition, age, or location and review participation criteria before applying.
• Ask your endocrinologist – Many hospitals, clinics, and university research centers run studies locally. Your care team can help you find ones that fit your background and comfort level.

If more college students and young adults participate in diabetes research, then our care becomes more real, relevant, and equitable. Even though participation can take effort, your voice drives progress for every PWD. You could help bring about the next treatment breakthrough, FDA approval, or revolutionary diabetes management strategy!