Patient view: “Knowing that my trial produced knowledge that will help others is priceless"

In this personal story of pregnancy, motherhood and clinical research, Nell Barrie gives a clinical trial participant's perspective on the importance of communicating trial results.

I’ve worked in health research communication since I left university, and it’s hard to escape the importance of clinical trials - they bring together the theory and practice of research and, most importantly of all, they involve real people with real health problems.

But I didn’t anticipate that clinical trials would have such a profound effect on my own life.

I’d always known I wanted children at some point, and I was really excited to find out that I was pregnant in 2015. I didn’t have any real reason to be concerned about the pregnancy and I wasn’t particularly worried when I had a bit of light bleeding early on.

A scan didn’t show any problems, so when it happened again at around 11 weeks I went for another checkup without too much anxiety.

"Missed miscarriage"

I felt like I’d gone into a parallel universe when they told me they couldn’t see a heartbeat and the baby hadn’t developed beyond about 7 weeks. I’d had a ‘missed miscarriage’, something that I didn’t even know could happen. I assumed it would be obvious if I’d been having a miscarriage - but as the medical staff explained, this wasn’t unusual and meant I’d probably have to have surgery to remove what had been a very much wanted pregnancy.

To say I was devastated would be an understatement. I felt completely blindsided and having to return home with what I thought of as a dead baby inside me was an absolutely awful experience.

Unfortunately going in for surgery was even worse - my minor operation was delayed and I had to wait overnight on a ward full of pregnant women. I nearly discharged myself because I found the experience so upsetting.

I tried to put this horrible series of events behind me but I was absolutely desperate to be pregnant again - I knew it was the only thing that would make me feel better. It took what felt like eternity, watching from the sidelines while many of my friends celebrated pregnancies and births, but in 2016 I was pregnant again - this time with a massive side order of anxiety.

New clinical trial

So when after an early scan I was offered the chance to take part in a clinical trial, I clutched at this straw straight away.

I’d had a tiny bit of bleeding again, and the trial was investigating whether using progesterone for women in my position could help reduce the chances of a miscarriage. Luckily for me, taking part in the trial was pretty straightforward - I just had to use daily pessaries until I was 16 weeks pregnant (assuming nothing went wrong).

Although I knew I might be given placebo pessaries with no active drug, at least I felt like I was doing something that might help me and others like me in the future.

When I reached the 12 week scan and saw my baby, I felt like I’d come out from the shadows and into the light. My son was born in November 2016.

Fast forward a few years and I was pregnant again - I’d told myself the miscarriage was a one-off and there wasn’t any reason to think it would happen again. But it did - history repeated itself and I had to go through the worst experience of my life all over again.

Risk of miscarriage reduced

Just after this second miscarriage, I saw the results of the trial I’d taken part in had been published - it showed that progesterone in early pregnancy did reduce the risk of miscarriage in women who had had at least one previous miscarriage.

I’d never know for sure if that trial helped me, but I knew what I was going to do now. I was pregnant again a few months later, and after speaking to a really helpful nurse at Tommy’s, who had helped fund the trial, I showed the trial results to my GP who agreed to prescribe progesterone for me. I knew I’d done everything I could and that gave me some feeling of peace while I tried to cope with a stressful pregnancy during the first stages of the COVID pandemic, including early scans that my husband couldn’t attend with me.

Perhaps it was the progesterone - and I was officially now part of the group of women who’d been shown to benefit from the treatment - but we made it to 12 weeks and saw our daughter on the screen. She was born in the first days of 2021, by far the best thing to come out of 2020 for me!

"The trial and its results changed my life"

What this experience also brought home to me was the importance of communicating trial results.

For me, I think the trial and its results changed my life. But for anyone taking part in a trial, they want to know the outcome - people take part mostly for altruistic reasons, knowing that there’s no guarantee the research will help them personally.

Knowing that my trial produced new knowledge that will help others is priceless.

The results of the PRISM trial have gone on change treatment guidance for women like me. In 2021, NICE made new recommendations on the use of progesterone in threatened miscarriage, and it’s been estimated this could help prevent more than 8,000 miscarriages every year.

Knowing that the research I took part in is already helping others avoid the pain and heartache I went through is an amazing feeling.

This guest blog was contributed by Nell Barrie, who took part in the PRISM trial and works in health research communications. TranspariMED would like to thank Nell for publicly sharing her story.