Clinical Trials

Messages to other people

Virtually everyone we talked to wanted to encourage others to consider taking part in a trial if it is offered. Some recommended it because they felt it would help other patients in future, and some because it could bring the individual more direct benefit – or a mixture of both. Amanda even suggested some trials could be fun, for example in preventive medicine. (See also ‘Reasons for taking part – personal benefit’ and ‘Reasons for taking part – helping medical science and other people’).
As these comments suggest, people were conscious that consenting to be in a trial is a very personal decision, and so advising others what to do is difficult. Several people wanted to reassure others that trials are safe and well-regulated, and that you can always withdraw if you have any problems or side effects that can’t be dealt with.
Even some people (such as Polly below) who had themselves decided not to take part in a trial said they supported medical research in principle, and would encourage people to give it serious consideration. But they and others advised people to get plenty of information and to think it through carefully. Hazel added, ‘These decisions should not be hurried, and you should not be hurried into them either’. (See ‘Being asked to take part in a trial’).
Lester took the view that you’d have to have “very strong, good reasons” not to go into a trial if it did not involve much inconvenience for you personally and might help others. But he recognised that this will depend on the type of condition you have and what your feelings are about the different treatments included in the trial.
 
Several people advised others to think particularly about the implications for family life, especially if you have dependent children or if your partner is likely to end up having to provide extra support and care.
On the other hand, some people felt it was important to make up your own mind and not to take other people’s views into account too much. Rose said, “You can discuss it, but the final decision has got to be yours and you’ve got to make sure that they know that.” Hazel had a similar view.
A few people advised others to think not only about the implications (positive and negative) for them as individuals but also the wider value and contribution of the research.
Joanna and Gill, for example, stressed that trials are not going to solve someone’s health problems instantly, and so one should focus more on the contribution the trial may make to the wider community.
A few people wanted to give people a more cautious message. Marie, who had decided not to take part in a trial and felt quite angry about the information she had been given, explained, “I’m not saying that people shouldn’t go on trials but I think you’ve got to fully understand what they’re telling you.”
Leslie was also angry about his experiences, and advised people to treat the information they were given ‘with great caution and considerable scepticism’.

David wanted to discourage people from taking part in trials just for money. (Paying people compensation to take part normally only happens in early-stage trials involving healthy volunteers). However, “doing some good to the human race” and helping other people with the same condition as you was a good reason to take part.

Last reviewed July 2015.

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