Understanding the lived experiences of patients is no longer a “nice to have” – it’s essential to ensure the industry and the drug development process truly puts patients at the centre of every decision made. As we embarked on one of our latest patient experience developments, we offered participants a rare opportunity to understand the challenges of managing not just one condition, but several, all entangled in a web of daily discomfort, fatigue, and complexity. Our experience of patients living with co-morbidities has not only resulted in a greater understanding of this unique and complex patient journey but has sparked real change in the industry providing better outcomes for both patients and those who took part.
As we listened to the stories of people living with these complex scenarios, a common theme became apparent – frustrations around time. These frustrations regularly revolved around the lack of understanding from their friends and family, as patients would struggle to keep up with the tasks of their everyday lives, while fighting against fatigue, back pain and headaches. This frustration was exacerbated by out of routine tasks such as attending hospital appointments, something that for those living with co-morbidities can be both frequent and sporadic.
To capture this complexity, our team designed an experience that would challenge every participant in managing their daily routine. Continuous interruptions delivered by the A Life in a Day app asking participants to visit the bathroom to simulate the higher-than-average frequency some patients face. The evening also consisted of a time-specific dialysis challenge where patients had to remain immobile for an extended period of time, a challenge for even the healthiest of people.
And that is where the transformation began.
For one clinical leader, the experience was nothing short of revelatory. Sharing amongst their team in a reflection workshop the realisation of just how challenging it is to be constantly interrupted during your working day and adding on the extra time pressures of hospital treatments.
Working in clinical research design, this leader decided to take action in their role and change the routine of their clinical research design, shifting it from a set of protocol-driven tasks to a more patient-conscious journey.
What began as an experience and exercise in empathy, became a catalyst for change.
In one of our most complicated experiences to date, we delved into the complex and often invisible burdens faced by individuals living with co-morbidities. By stepping beyond traditional narratives, we highlighted how overlapping symptoms and time-consuming treatments impact not just physical health, but also the emotional and social lives of patients. The experience has sparked powerful shifts in understanding, with many participants committing to more patient-centered practices as a result.
