The Power of Youth Voice in Health Research
Research shapes the future of healthcare, but too often, the people most affected by medical decisions who are patients themselves are left out of the process. For young people with chronic conditions, this gap is even more pronounced. Their voices are crucial, yet historically, healthcare research has been something done to them rather than with them.
I have seen firsthand how powerful it can be when young patients are given a seat at the table. Through my own work on the transition from pediatric to adult care in juvenile idiopathic arthritis (JIA), I have learned that involving youth as partners in research isn’t just beneficial but it is necessary. Their insights can shape more effective policies, improve patient outcomes, and ensure that research truly reflects the needs of the people it aims to help.
Patient engagement means involving patients not just as study participants, but as partners in the research process. It’s about shifting power and inviting people with lived experience to help shape what questions we ask, how we ask them, and how we interpret what we find. For youth, especially those navigating chronic conditions, transitions in care, or underrepresented communities, having a voice in research is more than symbolic. It is transformational.
Why Do Youth Voices Matter?
Youth bring a perspective that researchers and clinicians simply can’t replicate. They’re balancing education, friendships, mental health, and self-discovery often while managing medications, appointments, and uncertainty about the future. They know what it’s like to feel overlooked in adult waiting rooms, or to have their concerns brushed off as “just growing pains.” Their voices help ground research in reality and make the outcomes more relevant and humane.
My Experience: From Youth Participant to Research Contributor
I was involved in a study exploring how young people with juvenile idiopathic arthritis (JIA) transition from pediatric to adult rheumatology care. It wasn’t just about collecting stories, it was about co-creating the research itself. I contributed to shaping the language, conducted the research with 5 other patients with rheumatic diseases, wrote parts of the manuscript, analyzed the themes, co-led the focus groups and became a trained patient researcher.
We heard from emerging adults who described feeling “dropped” during the transition, or unsure how to advocate for themselves in adult care settings. But we also heard stories of resilience, agency, and the importance of having providers who listen. These insights didn’t just add “color” to the data but they became the heart of the findings.
Being part of this project wasn’t just validating, it was empowering. It made me realize that youth aren’t just beneficiaries of research; we’re co-creators of knowledge. And when we’re truly included, the research becomes more relevant, more ethical, and ultimately more impactful.
Making Space, Sharing Power
True patient engagement, especially with youth, requires more than a token seat at the table. It means making space for young people to speak up, to ask hard questions, and to challenge assumptions. It means mentorship, fair compensation, and a commitment to accessibility. It means treating lived experience as expertise.
If you’re a researcher, provider, or policymaker, ask yourself: Are youth actually part of the process or just the topic? And if you’re a young person with lived experience, know this: your story matters. Your insight is powerful. And your voice belongs in every room where decisions are being made.
Because in the end, health research should be about more than outcomes. It should be about people. And that starts with listening to those who live it every day.
Natasha Trehan, e-Health25 Patient Partner
Learn more about the e-Health25 Patient Partners here.
