As a statistician and a trialist, I've been involved with researching many different diseases and conditions over the years. I’ve planned and run studies, analysed data, and interpreted and disseminated findings from clinical trials to support the development of new treatments and interventions, all to help doctors and patients make the best healthcare decisions that improve and extend lives.

In my roles I don’t interact directly with the participants in trials, but I always think about their contribution in the research and the data they provide. Having this perspective is one of the reasons I agreed to serve on the Ethics Committee and research funding panels. It’s why I chose to be randomised as a healthy member of the public into the INTERVAL trial of blood donation frequency and why, like millions of others, I take part in research through Our Future Health.
I always figured at some point I’d be up close and personal to the participation side of randomised controlled trial of treatments, but it happened sooner than I expected and in a very different way.
When my son was a teenager, he developed a lump on his back. On examination, our local GP immediately sent him for further tests. I’d just finished teaching a course in Edinburgh and was heading home to Cambridgeshire when I got a call from my wife telling me to come directly to the hospital where our son had been admitted. Those tests led to the news no parent ever wants to hear: our son had a rare, life-threatening cancer. The world crashed around us all.
We had no idea if the regime my son was allocated to would be the one which proved more effective or not, we just hoped he would do well – and the data would help others.
This was about a decade ago and, as a spoiler alert, he’s doing great. When he was diagnosed, there was a randomised controlled trial open to test interventions for people with his condition. I knew this because, in an awful coincidence, his cancer was in an area I had been involved with researching for the past 10 years.
My son was old enough to drive decisions about whether to participate, but not legally old enough to sign his own consent form. I would have supported his decision either way, but I’m proud he chose to participate, knowing that it might help people like him in the future but not necessarily him directly. One scary Saturday afternoon, as we all sat together in the paediatric ward with his oncologist, I signed the consent form for his participation.
Like many clinical trials in real life, this wasn’t testing a bright and shiny new drug. It was a trial looking at which existing treatment regime would be more effective to treat his condition. The approach more commonly used in Europe was being compared to the approach more commonly used in North America.
Both treatments were known to work well for many (but not all) people. Both would involve 8 months of treatment with chemotherapy, radiotherapy and surgery, and about 100 nights in hospital. We had no idea if the regime my son was allocated to would be the one which proved more effective or not, we just hoped he would do well – and the data would help others.
My son amazed me with his strength, resilience, and unwavering good nature during such gruelling treatment. Our family, our friends, and all the hospital staff were phenomenal.
Every person that joined that trial – that joins any trial – is a hero. They deserve far more recognition, as do the people who support them on that pathway.
A few years ago, the trial had enough information to read out results. We only know those results because of the data about all the people who chose to join that study. They showed that the regime he had been allocated to was the better one for his condition and it would become the new standard for future patients and the baseline for further studies. My son – one of the lucky ones – still has regular check-ups and, 10 years on, he is happy and well. I am forever grateful.
Every person that joined that trial – that joins any trial – is a hero. They deserve far more recognition, as do the people who support them on that pathway. Seeing research up close and personal has been valuable for me, even if it was an experience I’d much rather none of us had gone through.
I want the work I do to make a difference now and in the future to thousands of lives. Research is amazing and data from participants generates the knowledge needed to make treatments better. Science-based medicine is the road to better healthcare and better outcomes.
Every contribution, with every data point, leads to hundreds of interactions between other patients and their healthcare practitioners that are better informed by this evidence.
This is just one story from one family. Countless times, people are contributing to clinical trials and are supporting the safe use of their health data for research. In doing so, they enable advancements, small ones and breakthroughs, to take place time and time again. Each improvement may not be easily noticed outside of the small circles of clinicians, researchers, and the loved ones of participants. Few findings make the national news. But every contribution, with every data point, leads to hundreds of interactions between other patients and their healthcare practitioners that are better informed by this evidence.
We should pause and celebrate with gratitude how data, research, and findings move us all forward inch by inch, day by day, towards better understanding and treatment for a whole range of diseases.
Matt resigned from his involvement in the trial prior to his son joining to avoid any conflict of interest.
Watch a video of Matt's story and find out more about how research and data is changing lives.
You can sign up to Be Part of Research via the NHS App and find out more about taking part in health research.
You can also learn about the NHS DigiTrials service that helps researchers improve patients' lives through clinical trials.
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Last edited: 19 May 2025 11:14 am