Seeing through the patient’s eyes
Creative Group Lead, Chiara Keating, reflects on the Clinical Trial Experience, challenging us to look beyond the data and see the human being navigating the “invisible burden” of trial life.
When most people think of a clinical trial, they think of data, processes, and outcomes, but at their core, a trial is a deeply human experience.
Behind every data point in a study is a real human being going through a state of uncertainty. Someone desperately trying to hold onto hope while navigating their illnesses, dealing with new or unknown side effects, all while trying to go about their daily lives.
Yet too often, trials are designed from an outside perspective, built around operational efficiency rather than lived reality.
When designing our new experience, A Life in a Day of a person participating in a Clinical Trial, as always, our goal is to look past the protocol and data and understand the wider impact on patients. To do that, we gather our insights directly from the source: talking to people living the reality.
The motivation of a patient:
To start, we needed to understand what motivated a person to join a trial in the first place. Some wanted access to new treatments, others wanted a sense of hope when traditional options were limited, more wanted closer monitoring or just the desire to contribute to something that may help others in the future.
These motivations are powerful, but they are only one side of the story. The decision to join is not made in isolation; it sits alongside the realities of day-to-day life and the demands that participation brings. And while we often focus on what draws patients in, we spend far less time understanding what it takes for them to stay.
Where motivation is lost:
Prior to interviewing our patients, I had anticipated hearing certain complaints about trials, such as concerns around unknown side effects or the fear of taking a medication with limited real-world testing.
However, once I began talking to people, what I learned was that, though my assumptions were somewhat correct, the real frustrations came from the everyday intrusions that trial life demands.
It was the endless reports, the complex medication regimens, or the beeping of a monitoring machine keeping them up at night. The need to remember, record and respond again and again, all while juggling work commitments, symptoms and family life.
So, I set out to embed these moments into a normal working day, to make visible to those on the outside looking in that a clinical trial doesn’t run neatly alongside someone’s life, it runs through it. But when the emotional load is overlooked in favour of more data, more insights and more admin, participation doesn’t just feel like a commitment, it feels like a burden.
It’s that weight that ultimately shapes how a trial is experienced, and whether a patient can realistically stay the course.
What’s YOUR motivation?
Our Clinical Trials experience offers a window into the reality of what it means to live as a patient on a trial, moment by moment, across an ordinary day. At the end, you’re asked a simple but confronting question: would you choose to stay, or would the burden be too great?
For those designing trials, it’s a chance to hear directly from the very people you’re asking to stay the course, sometimes for years of their lives. They’re inviting you to step into their shoes for just one day.
And even if trial design isn’t your role, the experience provides something equally important: a grounded understanding of what patients navigate, and a clearer perspective on what they give, every day, to help bring new treatments to life.
