Clinical trials & medical research

Reasons for wanting to take part: personal benefit

Young people we talked to agreed to take part in trials for a range of reasons. One of the main reasons was the hope that it might improve their own health or treatment. Many young people said they took part for a mix of reasons, both to help themselves and others, and helping medical science, but in this section we focus on personal benefit. (See also ‘Reasons for wanting to take part: helping medical science and others.’)

Kay aged 23 was diagnosed with cystic fibrosis at 2 months of age. She has taken part in two randomised placebo controlled trials on medicines intended to help people with cystic fibrosis prevent further complications. 

Like Kay and Robert above, many of the young people we interviewed had a health problem and hoped being in a trial might benefit them. This might include improving their health, learning more about their condition, getting a new drug or treatment, the chance of getting access to care they felt would be better or more specialised, and being more closely monitored. 

It has been suggested that people who take part in trials, whatever treatment group they are allocated to, have better health outcomes than people who do not take part in trials. This is known as the ‘trial effect’. In fact, reviews of the evidence have shown no significant differences in health outcomes for people given similar treatments within a trial or just as part of their normal care. 

It is important to bear in mind that until a trial has been completed, no-one knows if a new treatment is better than the standard or existing treatment, as Helena, a health professional, explains below. ‘New’ does not necessarily mean ‘better’. Indeed, new treatments are as likely to be worse than existing treatments as they are to be better. The UK Clinical Research Collaboration booklet ‘Understanding Clinical Trials’ includes a useful section on the risks and benefits of trials.

In some early phase trials, everyone may get the new treatment being tested. For Robert, knowing he would get access to a new gene therapy was a strong motivation.

In non-drug and drug trials people can also feel they really want the new intervention. For example, Jenna disliked injections; taking part in a drug trial meant there was a chance she could receive a treatment that didn’t involve regular injections. 

Some young people we talked to said they hoped taking part in research might help them feel better about their condition and give them some hope when they were feeling low about how it was affecting their lives. 

Getting a good feeling from knowing their contribution might help others in future could also be part of this sense of doing something positive. Some young people we interviewed talked of enjoying the experience and learning a lot along the way. This could apply to healthy volunteers as well as young people with a particular condition,

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For others we interviewed getting better was the most important thing.

Of the young people we interviewed few mentioned getting paid as a reason for taking part in trials, but some said it was just a nice added bonus and not their reason for taking part (See ‘What is involved in a trial: time commitment, costs and payment’.)

Last reviewed March 2017.


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