Taking part in a clinical trial

The Get Randomised campaign has been supported by medical researchers from across the UK. Over the coming months we will add information about research trials in need of participants. You will find these in our Get Randomised links page.

Most people have never taken part in a research study, or have even considered doing so. This is mainly because most have never been asked! Often people who have been asked shy away from the idea because they have concerns over taking part in medical research or do not feel they can personally make much of a contribution. The following information is intended to provide you with more background information on clinical trials to help you make up your own mind.

Why bother?

Of course we all expect the best medical care when we need it, and indeed in the UK we are lucky enough to get the best available care most of the time. But the best available may not always be the best possible. Helping medical research to move forward is partly something that we can all do to help the greater good. But it is fair to take a slightly more selfish view of medical research too. People who take part in research trials sometimes are not themselves the ones who will immediately benefit from any advance in therapy that results from the trial but increasingly they do so in the long run. In our society people are living longer, including those with long-term health problems. Although it tends to be treatments for the more immediately life-threatening illnesses that grab the news headlines most ill-health is less dramatic, extending over years from long-term conditions affecting the heart, circulation and lungs. Many treatments to help such illnesses have been developed and introduced within time spans that have helped the same people who took part in the study in the first place.

Taking part in a clinical trial not only helps others, including our families and younger generations, it sometimes directly helps those who take part.

Access to medical advances

A typical randomised clinical trial will assign the new treatment to half of the people in the study. Sometimes such treatments represent significant advances in therapy that may take several years to filter through to general use. People who take part in randomised clinical trials therefore sometimes receive treatment that is potentially well ahead of its time.

How much can I help?

The contribution of every single person who takes part in a clinical research trial is very significant. Such trials bring together people who are similar in some way, such as by the fact they all have the same illness. But the participants are also unique in the ways that human beings all are. Because people are allocated randomly to the different parts of the trial such differences even themselves out, but without that mix of people from all sorts of backgrounds the relevance of the trial to the ‘real world’ would be much less. Make no mistake, when someone takes part in a randomised clinical trial he or she is not just there to make up the numbers. Taking part in a randomised clinical trial is a very real and effective way for an individual to put something of value back in to the health care system.

How safe is medical research?

Examples do occur from time to time when medical research seems to ‘go wrong’. Such occurrences are very rare but they are far more interesting to the media than all the safely run trials. They also tend to involve research that is at a much earlier stage of development than those that are suitable to do as a randomised clinical trial. In the UK randomised clinical trials can not be run unless they have passed through an extensive assessment process. This ensures that the trial is necessary, ethical, properly set up and run and above all else that it is safe.

Some degree of risk is attached to medical treatment just as it is to life in general. The known risks of any clinical trial have to be very clearly set out before anyone can be asked to participate. Great importance is given to providing enough information in clinical trials so that people may give their ‘informed consent’ knowing all the facts first.

Potential risks always have to be justified in the context of the illness being treated. For example it would be unacceptable to use a new treatment that gave great results for sore throats if that treatment had a high risk of serious side effects. A sore throat is a nuisance but a minor one and does not justify taking a potentially dangerous drug. On the other hand a new treatment for someone with advanced cancer may carry the risk of serious side effects that are felt worth running if the drug also gives good results against the cancer.

It is a central part of any clinical trial in the UK that people may take part only if they wish to do so of their own free will and that they can leave the trial at any point in time without any obligation whatsoever.