Screening for unrecognised heart valve disease

Attitudes to other types of medical research

We asked people what they thought about different types of medical research, and whether they would be interested to take part again in another research study. There were many comments in favour of medical research generally, recognising its importance for making progress and improving care in future. This was one of the main reasons for taking part (See ‘Reasons for taking part’).
Some people had already been involved in other research studies. At the same time, people talked about having to weigh up the risks and benefits, and think about what the research was for, before deciding if they personally wanted to take part another time.
 
People with illnesses (and sometimes healthy volunteers) can be asked to take part in clinical trials, which are a valuable way to test new treatments. This can include all kinds of treatment, for example different types of surgery or rehabilitation, but most commonly people thought of clinical trials as a way of testing new drugs. In randomised controlled clinical trials, people are randomly assigned into two or more groups' those who receive a new treatment and those who receive the current standard treatment (the control group), so the results can be compared. If no standard treatment exists, people in the control group may be given a placebo (a ‘sugar pill’ with no active ingredient, that should have no effect) to test if the treatment itself is actually working. (See our site on Clinical trials for more information). There were mixed feelings about taking part in drug trials.
George thought a drug trial in which some people were given a placebo would be OK, ‘so long as the patients are being closely monitored, both sets of patients’ - though he was not sure he personally would want to be involved. Anne said she wouldn’t be willing to take part in any drug trial and felt ‘that’s more for the youngsters’. Rene agreed that she ‘wouldn’t chance it’ because she’s got enough trouble getting her blood pressure medication right as it is, and she’s 84. Hugh said, ‘I don’t even like taking the tablets that I have to take now, really, but they say that’s what’s got to be. So to take a tablet that’s unknown, really, I don’t think I’d be very happy at that.’ Others also talked about how they felt about risk.
Before any drug is tested in humans it will have been through a lot of safety testing, including studies in animals. Again, this caused mixed views among the people we talked to. Even if they thought animals should be used in research, they often stressed that researchers should take care to treat animals respectfully, and for many it was a ‘necessary evil’, which should be kept to a minimum. (For example testing beauty products on animals was unacceptable to everyone we talked to).
Clinical trials are carried out when we do not know which treatment is best, and researchers should explain carefully that people taking part may not benefit personally. The heart valve screening study felt different to people because they saw it as a benefit to themselves as well as others. Norman, for example, said he understood that ‘one perhaps doesn’t want to over-emphasise that the main reason for participating is to get some early treatment if there’s a problem. But I mean it is a clear benefit as far as I can see.’ (See also ‘Reasons for taking part’, ‘Feelings about screening and general health’ and ‘Getting results).
Norman had previously taken part in another research study which he felt had benefited him.
Brian, although he was very positive about the heart valve screening study and the need for medical research generally, felt sometimes individuals were asked to do too much.
Brian wonders if researchers pass on our details without permission. In fact researchers are not allowed to pass on your details to other research studies unless you have given permission. However, other research studies may get NHS permission to contact people who are registered as NHS patients.
Cathy and Fraser have been involved in several research projects, including one involving magnetic resonance brain scanning to understand more about memory loss. Fraser would have liked to be in the control group as someone who does not have memory loss but explained that the researchers decided he could not risk it, ‘because the scans involved very high magnetic fields, and because I have done some welding and used an angle-grinder, and there is a minute possibility that I may have particulate debris in my eye.’ However, he has joined another related study.
Fraser and Cathy both feel very positive about volunteering for future research.
For more views on other types of research see also our site on Biobanking'

Last reviewed August 2016.

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