No One Ever Asked a Sick Child: Rethinking Pediatric Clinical Trial Engagement

The success of a clinical trial is often measured with metrics and milestones. But patient advocate Gunnar Esiason shared a different perspective during our CORE Symposium: the true indicator of success is far more human. It is rooted in the clinical trial participant experience.

At CORE Symposium, Gunnar Esiason, a cystic fibrosis patient advocate and Senior Director of Patient Engagement at Raven, opened the event with his powerful, unfiltered view of clinical research from the patient's shoes, but with a twist: recounting his experience as a clinical trial participant. 

Gunnar Esiason, Raven (RA Ventures)

Why Pediatric Support Matters

Recounting his lifelong journey with CF and his experiences within the healthcare system as a child, Gunnar revealed a perspective that few have ever heard. His ability to articulate his childhood experiences in research was a voice typically delivered by the parent. But as an adult, it lets us directly into the child’s mind, offering a profound and sometimes chilling perspective.

Yes, the patient belongs front and center in trial design, execution, and enrollment. But from a pediatric lens, this concept takes on a whole new dimension, highlighting the need for pediatric clinical trial support.

Deep Dive: Lived Experiences and Lessons

"No path forward without clinical trials"

Like many study participants, Gunnar turned to clinical trials when he had run out of treatment options for his cystic fibrosis. 

Diagnosed at the age of 2, Gunnar endured years of hospital visits, treatments, and procedures before every approach began to fail and he was left, in his words, “a shell of himself.”  

By the time Gunnar entered his first clinical trial at the end of high school, he knew all too well the realities of being a patient. He’d lived it all, from “this won’t hurt” moments (which of course, always hurt) to endless tests and treatment changes. 

You would think, then, that someone like Gunnar was well-prepared for the clinical trial experience. Yet even the most informed and resilient patients need support to navigate the complexities of a trial.  

"No one ever asked a sick person"

Once the first trial began, “it was clear no one ever asked a sick person if the design made sense.” He and his family were trained on tech and PRO systems that didn’t work. The visits were 8-12 hours long, taking place every other week. These obstacles undermine supportive trial participant engagement.

Gunnar’s challenge to study sponsors is to think about patients as a finite resource that is required to feed clinical trials and to move them forward. Without trial participants, there is no progress. It’s in the participant's best interest to get them into a trial that is set up to succeed. And pediatric patients require an entirely different set of considerations. 

"A failure of pediatric patient engagement"

To examine the pediatric experience in clinical research, Gunnar shared a cautionary tale.  

When a new drug for cystic fibrosis hit the market, it looked like a clear improvement over the standard treatment at the time: both delivered by nebulizer, but the new drug for just three minutes, three times a day, instead of 30 minutes morning and night.  

It sounds great on paper, but the reality is that most children quickly switched back to the 30-minute treatment. According to Gunnar, it’s simple: “Find any 12-year-old and ask, ‘Would you prefer to take a nebulizer in the middle of the day?’ and any 12-year-old would say, ‘never.’”  

Despite the shorter duration, the mid-day disruption was a tough sell for the pediatric demographic. Though the science may be sound, meaningful engagement throughout clinical development is needed to ensure the experience actually works for the age group.  

Why Pediatric Support Matters

What Patient-Centric Really Means

Patient-centric clinical trials don't require moving mountains. From Gunnar's lived experience, they require thoughtful, sustained engagement:

• Understande the patient beyond the protocol 
• Communicate clearly and often 
• Build trust through ongoing engagement 

Practical Steps Sponsors Can Take Now

Of course, we need innovation in clinical research. But innovation takes time, and patients need support and adequate engagement now. What can sponsors do to make it happen? 

• Organize tasks and technology to keep participants engaged and adherent 
• Offer step-by-step guidance throughout each stage of the trial to reduce confusion and improve understanding 
• Provide easy access to support for assistance with participation requirements 

Need a helping hand?

From enhancing engagement, to improving adherence, to simplifying participation, we work with sponsors every day to create a better experience for trial participants of all ages and their caregivers. Learn more about our participant engagement solution. 

Frequently Asked Questions

What can sponsors do now to improve participant engagement?

Focus on practical, sustained support rather than waiting on big innovation:

• Understand the patient beyond the protocol, and communicate clearly and often.

• Build trust through ongoing engagement.
• Organize tasks and technology so they actually work for participants and keep them adherent.
• Offer step-by-step guidance at every trial stage, including tailored support for children and caregivers.
• Provide easy access to help for participation requirements.

What specific barriers did Gunnar Esiason encounter that undermined engagement?

He described trials where "no one ever asked a sick person" if the design made sense. Concrete issues included being trained on tech and PRO systems that didn't work, and 8-12 hour site visits every other week. These burdens increased friction, reduced trust, and made adherence harder, highlighting the need for practical, participant-first operations.