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Clinical trials: the patient's point of view

At MESM we spend most of our time focused on supporting clinical trials professionals – through equipment sourcing, supply, and servicing, as well as end of study equipment removal and reporting. If we’re not careful it can be easy to overlook the patients at the other end, who give their time and energy to the trials we’re supporting – the clinical trial volunteers and their friends and families. Recently, we were lucky to be joined by a guest, Billie, who came to share her experience of a clinical trial with us. In this blog post, we recount Billie’s story and talk about some of the things we learnt through hearing it.

Billie and George’s story

Billie was introduced to the world of clinical trials when her husband George was in a serious accident during one of his regular bike rides. He was hit by a car and suffered injuries to his head, chest and kidneys, as well as breaking every bone on the right side of his body.

Not long after arriving at the hospital, the family – which includes Billie and their children – were visited at George’s bedside by a research nurse. He wanted George to be involved in a head trauma drug trial. The request came as a huge shock to the family. They hadn’t even been informed that George had a head injury, and to make the situation even more stressful, they were told they had just two hours to decide.

George was in a critical condition, and now the family had a matter of hours to weigh up the pros and cons of taking part in a clinical trial.

One of Billie and George’s children was strongly against the idea, saying they did not want anyone ‘experimenting’ on their dad. On the other hand, Billie and George had just returned from a brilliant holiday where they’d happened to discuss becoming organ donors. For Billie, one factor in the decision was that the trial could help make a real difference to others’ lives, much like the organ donor register.

The family decided to allow the researchers to include George in the trial. And so, alongside a regular stream of doctors and nurses caring for George, and with the family not knowing whether he would be in a persistent vegetative state for the rest of his life, the research team became part of this already complex mix of activity and emotion.

There were positives and negatives to Billie and her family’s experience. Below, we discuss what some of those different factors were, and what clinical trials professionals can learn from them.

What we learned from Billie’s story

We’ve highlighted some of the learnings that really stood out to our team as they listened to Billie describe her experience.

Clinical trials can be precarious
We think of trials as meticulously planned and highly organised, and while this is true, researchers may be working under very time constrained, complex conditions. In George’s case, the research nurses had to work around a huge amount of other care and treatment, often with very small windows of time to do their work. For MESM, this really brought home the impact it could have if, for example, a piece of equipment is not exactly where it needs to be at the correct time.

Clinical trial participants are volunteers
Billie spoke about the fear of not knowing whether the work the research team were doing would interfere with George’s other treatment. On one day, Billie counted 14 lines going into George’s body, and the clinical trial was adding yet another factor for the doctors to manage. Volunteers put their well-being in the hands of researchers to help us move medicine forward for everybody. That is why it is so important that clinical trial protocols always centre patient experience and welfare.

Our patients are real people
Despite the worries that came with taking part in the trial, Billie spoke about the researchers as some of the only people who saw George in all his humanity. Other healthcare professionals would come in to check his kidneys or chest, and it seemed that in those moments George was reduced to nothing but the injury in question. The research team brought consistency among a stream of changing faces, and clearly viewed him as a whole person. It seems that this research team set a shining example for how clinical trial researchers and all healthcare professionals should treat their patients.

The idea of a clinical trial can be frightening for patients and families
You can see how the phrase ‘clinical trial’ won’t necessarily inspire a positive reaction in someone who is new to the idea. The word ‘clinical’ implies a lack of humanity, and ‘trial’ might suggest random experimentation. It is understandable that one of Billie and George’s children had reservations around the idea of their dad being the subject of unknown ‘experiments’. When it comes to recruiting and retaining patients for trials, it’s important to explain in accessible, plain language what the possible benefits are for the patient, the wider impact that their contribution could have, and how the patient’s safety and welfare will be managed by the research team.

How do we follow up with our participants?
We asked Billie what clinical trials professionals could do to improve the experience for patients and their families. She pointed out that after the trial, her family were never informed whether the drug was ever approved. There is no standard process to thank participants for their contribution, or to let them know what became of the trial they enabled by becoming a volunteer. It was powerful to hear Billie talk about this, and it made us think about whether the clinical trials industry can do better at updating participants about their contributions to the drug development process.

Where are Billie and George now?

Despite an initial prognosis that George might spend the rest of his life in a coma, he has made incredible steps forward in the three years since his accident. He has full consciousness, and can use assistive technologies to communicate with his family while his speech slowly begins to recover. He’s able to get around in a state-of-the-art standing wheelchair that even allowed him to walk his daughter down the aisle on her wedding day – something no one would have predicted at the time of the accident.

Billie has stayed involved with the hospital as a volunteer, and represents the patient and family side of the conversation at meetings and events. Overall, the family are glad to have taken part in the research, although they don’t know if they’ll ever find out what impact the trial had on George’s recovery.

We hope that hearing this story will be a starting point to reflect on the families affected by clinical trials and the contribution they make the field, and we want to say another huge thank you to Billie for meeting our team and sharing her story with us.