Understanding the real-world impact on the patient in Clinical Trials

Chiara Keating, Creative Lead for our upcoming Clinical Trial Experience, explores the importance of patient empathy in recruiting and retaining patients

How important is trust with clinical trial participants?

According to Edelman’s Top 10 Findings from their 2022 Trust Barometer, “distrust is now society’s default emotion”. 

In the current world climate, where people are bombarded with information in daily doses of the ‘bad news’ cycle, scandals, and misinformation, is it any wonder why there is so little trust to go around? 

It can be difficult to determine who to trust, whether it be in politics, companies, the media – or even medicine. 

As a patient embarking on a clinical trial, trust is a crucial and indispensable deciding factor.  

Patients are asked to trust that their health and well-being will be looked after, that their time will be utilised well and that the end-goal is going to help, if not themselves, then other patients just like them. Each patient must place all this trust on strangers. 

As someone who, until recently, had little to no real-world knowledge of clinical trials, I had an admittedly naïve approach to the notion of participating in one. If you’re sick, of course you would want to try anything to get better, right? 

It wasn’t until I started speaking to and – more importantly – listening to patients and their experiences that I started to understand their reservations and concerns. Mainly, that there is an ever-growing consensus among patients that commercially led companies and the healthcare system don’t always have their best interest at heart. 

There is an overall feeling that data is the only important element to those in charge and once you sign on that dotted line, you are no longer a person. You are reduced to an anonymised number on a page. 

So, how do you build trust with patients? 

Designing trials with patients in mind

The very nature of trials require anonymity – and for good reason. However, there is more that can be done to heighten the humanity and personability within trials. Simply by focusing on the patient, not just the data. 

This change can start at design level. By giving your designers an understanding of what it’s like to be a clinical trials patient, every trial can be built from its foundations with the patient in mind. By utilising learnings from this understanding and implementing them at a design level, you are showing patients at the point of recruitment that they are being, and will continue to be, listened to. By showing patient’s that they are being heard, you establish that all-important trust by demonstrating that they are so much more than data outputs. 

Designing trials with the aim of empowering HCPs to engage on a deeper level with their patients, alleviates some of the concerns early on by demonstrating that your purpose is to help patients, not just your bottom line. 

Breaking the cultural barrier

A patient’s background can also create hesitancy around participating in trials. Without making a concerted effort to understand their experience, representatives from key groups will continue to slip through the cracks. 

According to the AAMC, “Black patients account for just 5% of clinical trial participants in the United States, while White patients make up the vast majority.” There are several factors to account for this wide discrepancy in diversity within trials, such as location and financial restrictions. However, although this knowledge is widely known, more steps need to be taken to break down the barriers that stop patients, especially minorities, participating. 

The same article describes some of the ways companies are trying to expand their trials to recruit a wider demographic of participants, such as changing locations and representation within them. However, there is still more to be done around really understanding what life is like for patients once they step out of the clinic and return to their real-world lives. 

The first step towards breaking down those barriers is to start listening to patients from all walks of life. To establish what more can be done to make them feel willing and open to put their health in your hands. 

How does A Life in a Day fit in?

We have spent the last few months working with a variety of patients to identify the real-world impact of clinical trials. As we build our new Clinical Trials Experience, we aim to bring to life and demonstrate to participants what it’s really like for patients to embark on a trial, from the beginning of the recruitment process all the way through to the end of the trial.  

Not only are we discussing the common issues of logistics, financials, and fears during the trial, but also how the responsibilities placed on patients seep into their lives outside of doctor’s visits. To better understand how trials become part of their home, work, and social lives. 

The whole purpose of A Life in a Day is to integrate into your routine, make you become the patient and give you a better understanding of the real challenges patients are facing. 

By experiencing what it’s like to be a patient on a trial, you can communicate to them that you are trying to refocus your trials on the patient journey by putting yourself directly in their shoes. 

As all our experiences are built on the stories of real patients who want their stories to be told, A Life in a Day gives you the opportunity not just to listen to your patients, but live as one of them. 

To help your patients by gaining a unique understanding of how to make your trials truly patient-centric – by focusing on the patient as well as the data – contact us today.  Share on LinkedIn