Taking part in research: what you need to know

Have you ever wondered how to play a part in making things better for people like you in the future? For some people, taking part in research is a way to do that. Research studies can help to answer important questions about new tests, treatments or ways to prevent or diagnose disease.

Studies that involve real people (rather than cells in a lab, tissue samples or animals) are called clinical trials. These studies help to answer important questions, both for people with heart or circulatory diseases and those providing their care.

“We do clinical research because we aspire to know what’s the best treatment for our patients,” says BHF-funded Professor Gerry McCann at the University of Leicester. “I get very frustrated if we’re seeing a patient in a clinic and I have to say: ‘I don’t know whether it’s better to have an operation now or for you to wait.’

“That’s what drives me. It’s about trying to provide the best evidence-based care for patients.”

Professor McCann and his team have been funded by the BHF over many years. One of their previous studies, called PREDICT, looked at how to identify patients with diabetes who are at risk of developing heart failure.

David Steddy, 70, originally from South Wales, was one of the healthy volunteers in that trial. David played tennis five days a week and had no signs of a heart condition. Taking part in the trial meant that a problem with one of his heart valves was spotted. Calcium deposits had built up on it, which meant it wasn’t opening and closing properly, which can lead to heart failure and sometimes sudden death. “My surgeon told me, ‘In view of you being unaware of any symptoms, the identification of the condition by the PREDICT team almost certainly saved your life,’” says David.

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Why join a clinical trial?

Joining a clinical trial is a big decision, but there are several reasons to sign up. “My main motivation was the thought of helping to shape future treatments for the long-term benefit of so many,” says David.

He adds that there can be challenging aspects. “I appreciate that hospital visits can be stressful for some, and the sight of the equipment can be overwhelming, but try to remember that you will be doing something very special.

“If you are presented with the opportunity, don’t hesitate. Everyone running the study will be really appreciative of your participation.”

David adds: “I’m back to enjoying life and playing sports five times a week. Whether it was fate or just good fortune, so many people have contributed to giving me an extended life – and it all started with dedicated research.”

Luckily, David is not the only one who thinks like this. In a study carried out by BHF Fellow Dr Brian Halliday and the Patient Experience Research Centre at Imperial College London, it was found that altruism is one of the main reasons to participate in a clinical trial. “They want to help advance science and help patients in a similar situation,” says Dr Halliday. “Some patients also like the slightly closer attention from health professionals that they get in clinical trials, and I think they find that reassuring.”

As part of his BHF-funded PhD studies, Dr Halliday led a clinical trial looking at whether it is safe for those diagnosed with heart failure to stop taking their medications if they don’t have symptoms any more.

Mike Gosden, 74, was one of the volunteers. “It was the first time I had been involved in research, and even though stopping my medications was not successful for me, my experience of participating was positive,” says Mike. “Normally, when you see a doctor through the NHS, things can seem rushed, but during the trial there was time to have proper discussions with Dr Halliday and the rest of the team. I think we learned a lot from each other.”

What should I know before I sign up?

It’s important to find out what’s involved and any risks before signing up, and to carefully weigh up whether it’s worth it.

“In general, researchers do clinical trials because there’s an unanswered question, so we don’t know what the best treatment is,” says Dr Halliday. “We have to be very upfront with patients – that we don’t know what the risks and benefits are, but that there may be potential risks.”

It’s important to understand how taking part in the trial might change the treatment you get. For example, Professor McCann is leading another large international clinical trial to find out when is the best time to replace an aortic heart valve in someone whose valve is severely narrowed but who doesn’t yet have symptoms. The study will involve up to 2,844 volunteers from across the UK, Australia and New Zealand, and with BHF funding of £2.9 million is the largest single research project award that we’ve ever made.

Half those taking part will have an operation or procedure to replace the valve, whilst the rest will be monitored until they develop symptoms. The monitoring approach is what usually happens currently, but even that can vary depending on which cardiologist you see.

Those taking part are randomly allocated to either type of treatment, so don’t get to choose. It’s important that it’s random, so that fair comparisons can be made.

Professor McCann says: “I’m doing the trials to provide the best evidence so that we deliver better care for the people that we’re looking after. That’s really what drives us. And that’s what the British Heart Foundation enables us to do – answer important clinical questions.”