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’).
Medical research is important and can save lives. Elizabeth would definitely be interested in...
Medical research is important and can save lives. Elizabeth would definitely be interested in...
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What are your thoughts about medical research generally? Have you ever taken part in any other medical research?
No, I haven’t. But I think it’s a good thing. I think it should happen. And it’d probably save a lot of people’s lives and, you know, when they don’t know that there isn’t anything wrong with them, and there is, so obviously it would be a good thing.
And if you were offered another chance to take part in medical research would you be interested?
Definitely [laughs]. Definitely yes I would.
And did they say anything to you about whether they’d let you know what the results of the research overall are, when they find out?
I can’t remember that bit, whether she did or not. She did say there would be a follow-up. So obviously that must mean what you said, just a follow-up of everything, I would’ve thought.
Would you like to know what they find in the end?
Yes definitely [laughs]. Why not?
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.
Carolyn has taken part in research into bowel screening and might take part in other research as...
Carolyn has taken part in research into bowel screening and might take part in other research as...
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Well, I did, some years ago they were doing a bowel cancer screening, and my husband and I both went by public transport, because there again my grandmother had bowel cancer so I thought it was a good opportunity to get cleared, and everything was fine. But I think it would depend on how serious I thought the condition was. If it was something frivolous then I certainly wouldn’t bother.
With this one possibly, with family history, you might have.....
Yes, that was definitely a good idea, and as I say, I’ve been on hypertension tablets for 25 years.
But having it locally was a bonus?
Yes, ideal, yes.
Was the bowel screening also research?
I believe so, yes. It just asked for volunteers.
Right, so you actively volunteered for that one, rather than--?
Yes, I think we, you know, my husband and I both received the letter and we said, “Yes, we’ll do it”, even though it’s not very pleasant [laughter]. Yes, we did.
What’s involved in that one? Was that the one where you have to give a stool sample to...
Yes, it was an enema, and then a camera up your backside, [laughter] you know, not very nice at all. But at the same time it was reassuring to know there was no polyps or ulcers or anything else.
Part B
R' It was probably a good ten years ago now. It’s difficult to remember timescales, but it seems a long time ago.
Have you ever taken part in any other kinds of medical research?
I think I went for a bone density scan at one time, but I think that’s all.
Okay. Are there any kinds of medical research you wouldn’t want to get involved in? Because I guess often it’s a balance for people about their benefit, the benefit to others and the risks, possible risks.
Yes, mm.
What about drug trials for instance?
I think if it was a drug that I needed for my own well-being, I’d be rather worried about being given a placebo instead, that sort of thing, but as I say, I certainly wouldn’t want to do anything that was purely cosmetic. But otherwise, yes, I think I’d - yes.
Yes, so something maybe that was comparing one blood pressure treatment with another you might be willing to take part?
Yes, yes, but as I say at the moment what I’ve been taking has suited me right from the off so I haven’t had any problems.
And actually that might make it difficult for you to suddenly say, “Oh yes, I’ll move onto a...
Yes, “If it isn’t broken don’t fix it”, yes.
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.
Peg had been asked to take part in a drug trial but decided against it. That seemed more risky...
Peg had been asked to take part in a drug trial but decided against it. That seemed more risky...
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Peg' I did go for something else that was research, which was a bone [tut] for, what do they call it, osteoporosis.
Ah ha.
Peg' And they wanted me to take part because apparently one of my hips is a bit funny. But I wouldn’t take part because it meant taking a load more tablets, and I take enough at the moment and I didn’t feel that I wanted to do that. But this, it was just a scan and nothing - as I thought at the time - nothing more would come of it. So that’s why I agreed to go along. And I think, as you’re getting older, if these things are offered then you should take advantage of them because it not only helps you but it will help other people.
Peg' So I just think that if it helps other people, I mean the other business would have helped other people with the bones and what have you, but I just wasn’t prepared to take another load of tablets on top of what I’m taking. I’m lucky to be here and I don’t want to damage that effect, sort of thing, by taking something that I needn’t take if I don’t want to.
So that would have been a trial comparing one -
Peg' A four, that was a four -
Drug against another.
Peg' No, it was a four year trial.
For the bone disease, sort of thing. And they, they’d taken all the X-rays and what have you and they wanted me to take part. But they wouldn’t tell me whether it was a tablet that was a drug, or whether it was a tablet that wasn’t a drug, sort of thing, and I didn’t want to take that chance that it would mess around with what I was already taking. Although I was assured it wouldn’t. It’s just that fact that when you see my little dish of pills in the morning, to add another one or two to that would have been horrendous [laughs].
Roy' She pours milk on them like cornflakes [laughs].
Peg' [Laughs].
[Laughs] so is that like high blood pressure, or?
Roy' Everything.
Peg' We’re both diabetic. I’ve got high blood pressure. I’ve got trouble with my thyroid, an under-active thyroid, and I also have fibromyalgia. So taking that lot, I don’t want to have anything else, sort of thing. I’ll take anything that’s - health wise, we take a cod liver oil capsule every day sort of thing, both of us.
Medical research is vital. Susie is in favour but you need to know anything you are given is not...
Medical research is vital. Susie is in favour but you need to know anything you are given is not...
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Perhaps just one other thing would be whether you, sort of what your thoughts are about medical research generally.
As long as it’s not harming animals to the extent, you know, that it’s, you know, not very nice, but if anyone can take part in it and providing it’s not going to interfere with their health, I’d say, yes, I think it’s a good thing. It really is. I don’t believe in animal experiments for cosmetics and that, definitely not. When it comes to medical research there’s got to be a certain amount, hasn’t there? Otherwise they’re never going to learn, you know, what to do in the future. And the future that lays ahead is for our children and our grandchildren, so somebody has got to say, “Right, you know, go ahead and do it.” That’s how I look at it.
And you also mentioned there as long as it’s not going to interfere with your health. Were you thinking about specific examples of people being--?
Well, I think - can I take an example about the swine flu and injections? They weren’t fully experimented on, were they? And there was people, you know, that was virtually ill. I think they should make sure that everything, you know, has been fully found, you know, experimented on to make sure that it’s safe. Apart from that, you know, I think, you know, everything’s fine.
Yeah, so you’d be in favour of using animals for that sort of making sure it was safe.
Only to a certain extent. Not just killing an animal just to say, “Oh, yeah, we’re going to have this out of it and that out.” They’d have to be a hundred per cent sure that it was necessary, I think, you know.
It’s very difficult isn’t it with things, new treatments or vaccinations or drugs and things.
Oh, definitely.
Because at some point it’s got to be the first time in people.
Yes, yes. And all right, I mean, an animal’s got feelings, you know, but if they test it on animals and then on human beings, there’s a less chance of it sort of doing any harm to the humans, isn’t there? But as long as they don’t try to, you know, really operate on animals and, you know, make them suffer. This is the problem, isn’t it? But I’m not going to go out on the streets and demonstrate against it [laughs].
Would you go out and demonstrate for it?
No [laughs]. No, I can only say what’s in my heart, but I wouldn’t go out and demonstrate for it, definitely not, you know - not at my age, anyway [laughs]. We’ll leave it to the youngsters.
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).
Brian is happy for any of his organs to be used for transplant or research. He is in favour of...
Brian is happy for any of his organs to be used for transplant or research. He is in favour of...
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Well, I’ve always said, I filled in a card to say that if any of my parts can be used to help anybody else, then I’m quite willing to do it, and my wife is also of the same opinion. And I think that all this research on animals, if it benefits anybody, I think that it should be carried out. You know, I mean all this trouble with the university over that, and its labs and that, I thought that was ridiculous, really.
And the card that you carry, is that for giving your organs for transplant or is it also for research?
It’s mainly for transplant, I believe. Well, I mean, obviously if it went into research I wouldn’t object to that either.
Yep, yep. I’m not sure, actually, if the cards - I think the cards are only aimed at transplant. I mean, maybe that--
No, I’m not sure.
--would be something that we could have special cards for people to carry for research, perhaps.
That’s maybe a good idea, because obviously, I mean, I’ve got a card but I take it it’s for people to use my parts or whatever, but whether it’s just for transplant or research I really wouldn’t know.
Yeah, and you’d be happy with either.
I’d be happy with either, yes.
Pamela supports animal testing if it's essential and the animals are well looked after. She and...
Pamela supports animal testing if it's essential and the animals are well looked after. She and...
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Pamela' I’m not all that keen on animal research, but on the other hand I’d rather animals were used and if it’s going to save some lives of people well, you know, that is good. Because my brother worked at a medical research place with animals you see, and they did get really lovely treatment. I mean they’re not, like people think, tortured to death, because they’re not, are they?
Anthony' No.
Pamela' They’re looked after properly and taken great care of, and so if they use that and it’s going to help keep people alive, well I, you know, I quite agree with that.
Anthony' Yes, I wouldn’t want to see animals ill-treated, but I mean - certainly not. But I think you’ve got to take everything, bear things in mind, really. I wouldn’t want to see masses of animals being used when, you know, one or two could be used or other methods could be used, but obviously as research goes on, different methods develop, and you know, it may be in the future you don’t need to use animals, but.
And I think probably this is the last thing I want to ask you, is, if you were offered other opportunities for different types of research, what you’d feel about that?
Pamela' Yes, we would go.
Anthony' Yes, we’d be quite happy about that, yes.
Pamela' Yes because, you know, not only might it help us but, you know, it is good to help other people if you can, and if by just going for a few appointments and a few things like that, that’s not taking up much of our time.
Anthony' No.
Pamela' And if it’s going to save somebody’s lives, well that’s wonderful.
Anthony' Mm. I mean, for instance I wouldn’t mind if I was sort of say fitted with something like a pacemaker or something like that, if it was going to do something. I’m not volunteering for it, if you know what I mean, [laughter] but I would be quite happy if they, if they wanted to do something of that sort or one of these monitors that you can wear that, I’d be quite happy with that. We would, wouldn’t we?
Pamela' Yes, yes we’d do anything like that.
Roy and Peg hold different views about animal testing. Peg is against animal testing and any...
Roy and Peg hold different views about animal testing. Peg is against animal testing and any...
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Peg' Yes. I think it’s dreadful that they use the animals. I know we wouldn’t have all these things, but I just feel, because I just love all animals, sort of thing.
Do you feel differently, Roy?
Roy' Well, I mean, you know me. I’m too laid back anyway.
Peg' Yeah.
Roy' I mean, I suppose if they’ve got to - a lot comes out of this business of using animals, because they can’t use people, can they? There you go. I think a lot of it is to do with the monkeys and things like that which people are uptight about. But if they do it with pigs and things like that, I don’t think people would worry so much. Well, that’s right, isn’t it, if you think about it?
Yeah, people are, there’s something.
Roy' Anything that you’re going to eat, an animal you’re going to eat, is different to one that you see swinging around in the trees, isn’t it? I mean, that’s what I think.
Peg' I don’t know how else they’d do it, but I still don’t agree with it. But then that’s just my view.
And do you have any views about embryo research? You know where they use the stem cells from embryos and?
Roy' No, not really.
Peg' I just think it’s interfering with nature. I mean [sighs] we haven’t got any children. And it wasn’t by choice, was it? I was just unfortunate.
Roy' That’s right.
Peg' I had a form of cancer for the first pregnancy and I just couldn’t - well, I could get pregnant but I couldn’t carry the children, and I just think that’s God’s way of saying, you know, you can’t have children. And I don’t think human beings should interfere with nature.
Roy' You look at the little tykes now I’m not so sorry we haven’t had them [laughs].
Peg' [Laughs].
[Laughs]
Peg' And all this business when people part or and what have you and they have cancer and they can’t reproduce and all the rest of it. That’s God’s way of saying you can’t have children, or something like that.
Is religion important to you in these things or?
Peg' Well, no, no, it’s not. It’s not. It’s just, I just don’t feel that it’s right that you should interfere with human nature.
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.
Norman had previously been in a study in which researchers measured his aorta (the main artery...
Norman had previously been in a study in which researchers measured his aorta (the main artery...
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Have you been involved in other research programmes in the past?
Yes, I have, in an aorta study. I took part in that over a period of two or three years, until I was, became - I was on the borderline of the study with a 3 centimetre, no, a 3.5 centimetre aorta at the time was at the limit of the study. And I’m still, I’m still awaiting a further check on that, because my aorta is now 4 centimetres. [After the interview, Norman clarified that he thinks its 4.5cm].
So were you, you were excluded from that study because you were, it was too big or too small?
Well, I think at the end of the first stage of that study, I think I was then above the line that they wanted to pursue. I don’t understand it completely.
No, no. Would you have liked to know more about why you were not able to continue?
No, I mean I was, I was happy that the study was focused in a particular way, and I was just outside that boundary at that point.
So how is that being followed up now?
Well, I’m due to go for another, I don’t know whether it’s an ultra scan, or - around next March, I think, just to check whether there’s any further change.
And is that the worry about an aneurysm or something like that?
Well, I mean that’s obviously a concern. And I’d rather have a bit of plastic put in before [laughs] I had an aneurysm than find I’ve got a 20 percent chance of survival if I have one.
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 has been asked to take part in more research since and feels 'you can be pestered with too...
Brian has been asked to take part in more research since and feels 'you can be pestered with too...
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And just, before we started the interview you mentioned to me that you’d been contacted by other researchers doing other projects …
That’s true, yeah.
So…
I mean, I had one a couple of weeks back, but I can’t remember who it was now, to be honest. And but I did tell them that I wasn’t interested. I was just doing the one which I’m carrying on with. And I think at, at the present time I haven’t got more time to, to put into these things, you know. I mean, I think one is sufficient. I said, “I’m doing the one that I think is most important”. I think it was some kind of survey they was doing or something, but I told them twice that I wasn’t interested. So…
You had to tell them twice?
Yeah, I had to tell them twice.
Yeah, they come back a second time and they sent me a letter saying that they wrote to me in the past and I, and this and that and they wanted to come again. But they didn’t ask me to make an appointment with them. All of a sudden they just turned up. They was lucky to catch me really, because I’d been out and I’d just come in, just put the car in the garage and they was on the door. But I told her, I said, “No, I’m not interested.”
And I know you’ve been positive about encouraging people to take part in medical research.
Definitely.
But do you think that people who are involved in one project should be left alone by other studies?
I think you can be pestered with like too many. And one wonders if at times that one people tell others and it gets passed on and then on and on and that’s the reason you gets contacted. I do think that happens.
So once this one has finished would you be willing to take part in other ones?
Only to do with what I’m, a follow up on this one, yeah, I’m quite willing to carry on following up on this one. But I won’t take any part in any in future. Unless it’s something to do with, I mean, if there was something to do with the polio or something like that which do involve me, then obviously I would take part in anything to do with that.
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.
One research study Fraser has joined is comparing examples of his written work going back over...
One research study Fraser has joined is comparing examples of his written work going back over...
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Fraser' I can’t remember what the title of that particular project is, but what it is doing is looking at people’s writing over a long period of time. And it so happens because of my profession, and then because of my hobbies, that I have been writing - I first started writing, I suppose the first thing I really wrote was my PhD thesis, which was in 1964, and then you get technical papers which follow from that, and in the course of my career I’ve got technical papers in the open literature in my research field. And then because we were sailors for many, many years, you join sailing clubs. And boats are a bit like cars. You know, you might be a member of the Morris Minor association, or the VW Camper association, or something like that. And you write up your experiences of where you’ve been, and what you’ve done, and technical problems that you’ve bumped into with the boat, and how you tackled them. So here and there over the last, what is it? It’s now--
Cathy' Forty.
Fraser' forty-six years, I have been writing articles of one sort or another. And the early technical ones, of course, are in the open literature. But the later ones, over the last ten, fifteen years, are on my computer. So it’s very easy just to, you know, send off an email with all these files attached and say, “Well, here you are. That’s...”
Cathy' And they go, “Gulp.”
Fraser' [laughs]
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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