Clinical Trials

Attitudes to taking part in another trial

We asked people what they would think about taking part in another trial if it was offered in future. As with their previous decision, people said they would be influenced by a mixture of reasons, including a sense of duty to help others but also their own personal benefit. A few people felt fairly sure that they would take part another time, and some already had.
However, the most common answer was ‘it depends’. Many people pointed out that you can never predict exactly how you will feel, and said their decision would depend on a range of factors, including the type and severity of the condition, the type of interventions being tested, and the balance of risk and benefit.
 
One of the key factors was the severity of the illness. Lester explained his contrasting views about trials when someone is seriously ill compared with a screening trial involving healthy people, which would involve less inconvenience or risk.
While some people thought they would be less likely to take part if they were seriously ill, others thought they might be more likely to consent – either because it was a last chance for themselves, or because they had nothing left to lose and it might help someone else.
The idea of risk and experimental treatments was a common concern. Several people mentioned the incident at a commercial research unit based at Northwick Park Hospital in 2006, in which healthy volunteers in a Phase 1 drug trial became extremely ill, as an influence on their attitude to future trials. A copy of the Inquiry Report of this incident can be downloaded from the Department of Health website.
Several people said they would be more cautious about a trial involving surgery. Tony, who has already had prostate cancer surgery and found it very unpleasant, was unsure he’d want to be in a trial where he might be randomised to surgery (as in the Prostate testing for cancer and Treatment Study, ProtecT). He said, ‘It’s totally different from other trials of which I have heard, and in which I have participated, and I should have to give serious thought to it before making a decision.’ Sarah doubted whether she’d want to be in another trial involving anything ‘invasive’ such as injections.
Some people also mentioned that they would be unwilling to take part in any commercially run trials, whereas for others this was not a concern. (See ‘Funding and publishing trials’).
 
Trust was another important factor. Lester (above) explained that he had been brought up at a time when respect for doctors was automatic, but nowadays he might be more questioning. Sergio (above) also reflected on the Northwick Park incident and how it might have made him less willing to trust, even though his own experiences had been good.
 
There were several comments about the need to weigh up the information carefully before deciding whether to take part another time.
Caroline had been fairly happy with her experience of a clinical trial of decision aids for women deciding whether to have a second caesarean. But she had since been put off taking part in clinical research because of a bad experience with an audit study on the postnatal ward.
Hazel was also concerned about the quality of research and whether it was addressing questions that would be important to patients. This influenced her thinking about whether she’d agree to take part in a trial in future.
Gill explained how she too would want to gather and weigh up a lot of information before deciding.
Gill would have felt the same way whether the trial involved comparison with a placebo or between two active treatments. However, some people who had willingly volunteered for other types of trial felt differently about placebo-controlled trials and thought they would be less likely to consent.

Last reviewed June 2015

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