When I was first diagnosed with Crohn’s disease at twelve years old, I had no idea my life was about to split into two parallel paths: one medical, one personal. On one path were the doctors, lab results, and treatment plans. On the other were the birthday parties missed, the meals skipped, and the subtle distance between me and friends who didn’t quite understand. I was told to advocate for myself, but no one really explained how. I was asked to describe my pain, but no one told me what to compare it to. I was expected to survive it, but was rarely asked how I was living through it.
Now, years later, I realize that the small moments—the ones I didn’t think mattered—hold immense value in the world of medical research. My story, like those of countless other young people with chronic illnesses, is more than just a timeline of flares and remissions. It’s data. It’s evidence. It’s a voice that can help shape the very science we depend on.
This belief is at the heart of Young Patients’ Autoimmune Research & Empowerment Alliance (Young Patients’ AREA), a group of young people living with chronic illnesses who are working to bridge the gap between patients and researchers. We don’t just share our experiences — we translate them into insights that drive studies, fund priorities, and create patient-centered care models. Through our current work with the Patient-Centered Outcomes Research Institute (PCORI), we’re helping define what meaningful research looks like from the patient’s perspective. And that starts with telling our stories:
From Silence to Significance
For many years, patient voices were relegated to the sidelines of medical research. We were subjects, not collaborators. Our experiences were summarized in checkbox forms or filtered through clinical language. But a growing body of evidence, much of it championed by organizations like PCORI, shows that involving patients leads to better outcomes, stronger data, and more ethical research practices.
In the pediatric, adolescent, and young adult worlds, this shift is especially critical. Children, teens, and young adults often struggle to explain their symptoms, express concerns, or push back on decisions. And yet, we are the ones who live with these diseases 24/7. We know what it means to spend lunch breaks in the nurse’s office, to pack emergency kits for field trips, or to navigate adolescence with a body that doesn’t always cooperate. Our knowledge isn’t abstract—it’s lived.
Turning Experience Into Evidence
My first experience contributing to research didn’t happen in a lab or a hospital, it started when I signed up to participate in studies through Rare Patient Voice, an organization that connects patients with rare and chronic diseases to researchers seeking real-world insights. Through their opportunities, I began sharing my perspectives on what it’s truly like to live with pediatric Crohn’s. That experience opened the door for me to join conversations with other young people in Young Patients’ AREA, where we recognize that clinical trials often fail to capture the full reality of living with an autoimmune disease. For example, exclusion criteria frequently leave out patients with coexisting conditions or more complex medical histories: patients like us. Additionally, outcome measures (like tracking stool frequency or CRP levels) don’t always reflect whether we’re actually feeling better in our daily lives. These considerations (and more) make one thing clear: our lived experiences aren’t just anecdotes—they’re critical data that researchers need to hear.
Research could be wrong about what matters unless we speak up.
Through opportunities like participating in focus groups, helping design patient surveys, and contributing feedback on study proposals, we are able to use our own stories as tools for change. It highlights blind spots in research design and helps redirect studies toward questions that actually matter to patients. For example, while a researcher might focus on mucosal healing as the ultimate goal, many patients care just as much about reducing fatigue, improving school attendance, and preventing weight loss.
The PCORI Model: Listening by Design
The work we do through Young Patients’ Area aligns closely with PCORI’s mission. Founded in 2010, PCORI is a nonprofit research funder created to ensure that patients and caregivers have a central voice in shaping health research. They prioritize comparative effectiveness research, or studies that compare different treatments to see what works best for real people in real-world settings.
One of PCORI’s guiding principles is engagement: bringing patients, caregivers, and clinicians into the research process from the very beginning. This includes setting priorities, selecting outcomes, and even helping interpret and disseminate findings.
Our job isn’t just to talk about symptoms—it’s to reframe what success looks like. For me, success might be attending college classes without fear of a flare. For another patient, it might be gaining the confidence to disclose their condition to peers or employers.
Why This Matters for the Future of Research
The future of research must move beyond lab values and into lived values. That means acknowledging that a good lab result isn’t always a good day. That means tracking not just disease activity but life activity. That means involving patients not as tokens but as co-designers of the systems meant to treat them.
And stories like mine are essential to this shift. They put a face to the numbers, a context to the clinical trials, and a purpose behind the protocols. They remind researchers that behind every data point is a person with hopes, routines, and plans that chronic illness interrupts.
Call to Action: Let Us In
If there’s one message I hope readers take away, it’s this: patients—especially young patients—are ready to be partners in research. We have insights you can’t find in textbooks and observations you won’t hear in brief clinic visits. But we need to be invited in, heard fully, and trusted deeply.
Organizations like Young Patients’ AREA are leading this movement, but we can’t do it alone. Whether you’re a clinician, researcher, nonprofit leader, or fellow patient, consider how your work could be transformed by listening better. Read our stories. Include our feedback. Let our lived experiences shape the next generation of solutions.
Because at the end of the day, research should be about improving lives. And no one understands what that takes better than the people living those lives every day.
Suggested Reading
Forsythe, L., et al. (2019). Patient engagement in research: Early findings from the Patient-Centered Outcomes Research Institute. Health Affairs, 38(3), 359–367. https://doi.org/10.1377/hlthaff.2018.0 5067
Patient-Centered Outcomes Research Institute. (2024, February 26). The value of engagement in research. https://www.pcori.org/engagement-research/value-engagement-research
