Elaine - Interview 04

Age at interview: 49

Brief Outline: Elaine has taken part as a healthy volunteer in several diabetes and metabolism research studies, where she has given blood and tissue samples. Healthy volunteers help researchers understand how influences such as diet and weight interact with our genes.

Background: works as a healthcare assistant. She is married with two sons aged 17 and 22. Ethnic background' white British.

More about me...

Elaine was first approached several years ago, when her GP surgery sent her a letter asking if she’d take part in a diabetes research study as a healthy volunteer. Elaine has taken part as a healthy volunteer in several diabetes and metabolism research studies, where she has given blood and tissue samples. Healthy volunteers help researchers understand more about how environmental influences such as diet and weight interact with our genes.  This will help to develop a better understanding of why some people are more susceptible to diabetes, heart disease and obesity than others and in the development of future treatments.

 

The first study involved having her height and weight measured, and giving a blood sample. It seemed like a small commitment so she agreed to take part. Now that she is on the clinic’s list of volunteers she is often asked to take part in further studies. Sometimes she has to eat no food before arriving at the clinic and then staff test her blood at regular intervals, including after giving her food or sugary drinks. Elaine quite enjoys going along – once the needle is set up for taking blood samples, she gets to relax with a magazine, and finds it quite restful. She has also got to know the research nurses well over the years, and enjoys seeing them and chatting to them. They have always been extremely helpful and given her all the information she needs so she trusts them.

 

As time has gone by Elaine has taken part in some studies that have been a bit more invasive. One involved having a sample of fatty tissue taken from her abdomen and thigh, but she was given a local anaesthetic and it really did not hurt. More recently, staff wanted a blood sample for an artery in her leg, and it proved difficult to get the needle in so they had to stop. She was left with a very large and rather sore bruise. This has put her off a little bit, but overall it was not very distressing and she still thinks she will go back another time. The doctor involved in that study gave her his phone number in case she had any more problems, which impressed her.

 

Although she is paid a small amount for taking part, that is not why she does it, and at first she tried to refuse payment. Now she sometimes gives it to charity instead. She does it because she feels it’s important to contribute and this is something she does not find too difficult. Other people might want to run a marathon for charity but she prefers helping with research. The fact that there is diabetes on her husband’s side of the family may also have influenced her. She feels the risks in this kind of research are low and minor, but she would feel differently about taking part in, say, a drug trial because of the risk of side effects. She declined to take part in the UK Biobank study mainly because the appointments were inconvenient. Elaine encourages others who are thinking about it to go along and find out more. You can always say no, and researchers would rather you went along to ask than that you did not go at all.

 

Elaine describes the process of giving a blood sample as a healthy volunteer in a diabetes study.

Yes, I think they need, because some of the tests have, sometimes you go along and you have to fast in the morning, and they take blood samples, they set up a cannula in your arm, so obviously they’re not just constantly, you know, putting needles in, but they put a cannula in and they take blood every so often. And then halfway through the actual testing they’ll then say, “Could you have this sugary drink?” which isn’t the nicest tasting drink but it’s all right, and maybe you’ll get something to eat as well, and then they take more blood samples. And it’s to see how - I think it’s to see how, you know, your blood supply, you know, goes to like to the fat tissue round your stomach and, you know, all that kind of thing. I mean, I don’t know enough about it, but yeah, so—

 

Yeah, so they want to...

 

They need help, they obviously can’t do that with people who are diabetic.

 

No.

 

But they need people who are healthy and don’t have diabetes, to see how the body reacts.

Elaine reflects on how the studies she has taken part in have become more invasive over time, but she knows she can always say no.

Well, it’s been a wee while since I did one and I can’t remember when, I’d have to go and look up, but I would say that as time has gone on they have got more and more in depth. So I suppose like you start off maybe just having a blood test done, and then it’s got more and more and more involved. And I think from what one of the nurses said to me it’s that when they’re doing their research they obviously are looking at different things and people’s, you know, like blood might match up to something that they want to then move on to the next stage, or whatever. But they always tell you in advance what they’re going to do. The last one I did, did involve, it was quite invasive, and they did tell me that it was very invasive, and I read through it and I thought about it and thought about it, and decided that, yes, I would go ahead. There was like one instance where they were sort of taking blood from an artery in my leg that they just found it quite difficult to do just because of, I think, the anatomy of it all more than anything. And they decided that, you know, that it wasn’t going to work, so they stopped, you know. I was left a little bit bruised and a little bit sore, but they were very, you know, they were just very kind and made sure that I was okay and that I was happy, and that they gave me, the doctor even gave me his number and said, you know, “If you have any problems you can phone at any time”, and you know.  But it was at the end of the day it was a bruise, you know. And it goes.

 

Has it put you off a bit?

 

It did put me off slightly at the time, yes. I think - and I think because they’ve got more invasive as they’ve gone on you do start to think, “Mm, do I really want to go through this?” But having said that, if the letter came through next week or in a month’s time, I’d probably do it again.

 

I do think, [mm] well, yeah.

 

I do think that [sighs], you know, it’s a bruise, at the end of the day. You know? And I know - because, I think because I know them so well now, I know that they wouldn’t, I trust them not to do anything that, you know - I think it - I know that if they felt that they weren’t going to get what they wanted that they would stop. And likewise I also know that if I turned round and said, “Look, I’m really sorry. I’ve - enough is enough.” I know that they would be, they’d stop as well.

 

So that trust...

 

Yes.

 

...coming from knowing them is quite important?

Yeah, and I suppose as well - well, the way they’ve done it, I don’t know if everybody does it that way - but I suppose you start off that they’re not asking, you know, the actual research study day isn’t asking for very much, and it just gets slightly more in depth as you go on.

Elaine was invited by letter to give a blood sample for research between 10 and 14 years ago. She has been invited into several studies since.

Well, I was contacted by letter. I don’t know why. I suppose, I think they got my name from the GP surgery and just asked me to go along for a blood test and height and weight, and that was all. And I thought, “Well, there’s nothing much to that, so I’ll just do it.” And then it stemmed from there.

 

And so when, how long ago was that?

 

Well, I’m not sure but I think it must have been about somewhere between ten and fourteen years ago.

 

Right.

 

Yeah.

 

And have you been going all the time since then?

 

Yes.

 

Or have there been gaps?

 

Oh, there’s been gaps, you know. I mean, some years you don’t hear from them, and then at other times you could hear from them twice a year or, you know.

 

And then sometimes when you get a letter asking you to go along to do something it could be quite a few months, because by the time you sort of liaise with them and then you get mutual dates, and then you quite often go up for a like a pre sort of screening, you know? So you go up and they’ll go through everything with you that they’re going to do, maybe do height and weight again, and blood pressure, take a sample of blood, and then you go in again for the actual proper screening, so that in itself could take quite a few months in between.

 

And when you first said yes, can you remember what they were looking for in that study?

 

Not really. I’m sure even at the beginning it was something to do with diabetes, but I’m not a hundred per cent certain, because it was just so long ago. But obviously everything since then has been due, has been with the diabetics, you know, to do with diabetes.

The staff have always been willing to discuss the research with Elaine and answer her questions.

And the kind of information that you’ve been given about these different research projects, what are your feelings about the way that the information is presented?

 

It’s fine. I mean, some of it is obviously, it does go into quite a lot of detail and it’s beyond, you know, I think most people’s sort of knowledge. You know, it’s quite hard to take in. But I mean the nurses and doctors that I’ve encountered are always more than willing to go through and talk through it with you. And they also do say in the letter that if you want to discuss it with them you can phone them at any time or you can discuss it with your own GP. So you’ve got plenty of opportunities to sort of find out more about it if you want to.

 

Is there anything you think they could do to improve the information?

 

I suppose it’s difficult, because I mean I - obviously you like to know what’s happening to you, and there have been times where I can remember one time reading something and I’m thinking, “Oh God, I don’t really understand that. That sounds quite invasive.” But I talked it through with a nurse that I know, and when she explained it to me I thought, “Actually, it’s not that bad.” So I suppose that it could be off-putting to people when you get, you know, a big wad of paper and it’s all medical terms. But the fact that if you do, if you are unsure, do talk it through with somebody because you’ll get a better idea.

Taking part in studies is relaxing and fun for Elaine. The staff always ensure she feels comfortable.

I think it’s very important, because you get to know the staff, and I suppose in some way they’re a bit like, they’ve become like friends, you know [laughs]. You get to know them, and you know, I quite often think, “Oh, that’s quite nice, actually.” Because I’m going up to see them and you chat and you catch up, and because you can be there for half a day or a whole day, and it can be quite nice because sometimes you’re just lying on a bed, you know, once they’ve got everything into you, you know, I’ve sat and read magazines and they put the radio on. And there are other times with the research, you know, you’ve got to concentrate more on different things, but quite often you’re just, you know, it can be quite a nice day [laughs]. Quite relaxing, you know.

 

 [laughs] And at, are the research nurses who are there now, have they been there quite a long time?

 

Well, the ones that I know, yes. Yeah, they have. I think I’ve known them from virtually at the beginning.

 

Yeah, and what is it about their manner that you, you know, if you were trying to encapsulate what it is that they do so well.

 

Well, they’re very friendly.

 

Uh-huh.

 

And nothing’s ever too much trouble, you know. Sometimes you can be all wired up with all sorts of different stuff and, you know, you think, “I really need to go to the toilet.” And, you know, you think, “Oh God, what a shame, they’re going to have to disentangle me from all this stuff.” It’s never a problem, you know, and they’re always, you know, they’ll ask you, you know. They always look after you and make you feel very comfortable.

 

Yeah.

 

So I’ve got no complaints whatsoever. You know, they have looked after me very well.

Elaine is a healthy volunteer. She saw no personal health benefit in taking part.

Well, I must have just read what they sent to me, and because it was only something like taking your height and weight and a blood sample, I thought, “Well, that’s not a big issue, you know, if it’s going to help them, you know, I can quite easily go along, takes half an hour at the very most.” And, you know, it’s not any different from going to give blood, is it? In fact, it takes less time. So, you know, I just felt that some good would come out of it.

 

Was there any part of it where you thought you might personally benefit from taking part?

 

Not really. I mean, there’s no history of diabetes in my family. There is on my husband’s side, so maybe that influenced me slightly. But I certainly didn’t feel that I would ever be at risk of having diabetes myself so it was never, not for me.

Elaine feels that no-one should have to take part in research but that we should all find some way to contribute to society.

Do you feel there’s a sort of social responsibility to take part?

 

A little bit, yes. I mean, I don’t think people should be made to take part in it. You know, I mean there’s - I mean, there are people who just the thought of going up to hospital or the thought of needles or anything to do with that just makes them feel quite squeamish and quite ill. So, you know, I can understand that they wouldn’t want to. But I think if everybody, you know, does a little bit - and it doesn’t have to be, you know, research. You know, it could be, there are lots of people do, you know, charity runs for things. But I just felt that it was something that didn’t bother me, having blood taken from me or a needle put into me, it just doesn’t bother me.

 

So I felt quite happy to contribute that way.  It’s better than running a marathon [laughs].

 

Elaine, a healthy volunteer, thinks a gift would have to be 'a bigger thing like a kidney', rather than research samples.

What does gift imply that that isn’t, doesn’t match with this idea, then?

 

I don’t know. Well, to me giving a gift’s sort of a bigger thing. You know, like giving like a kidney or a - you know. But to me, I mean, going along and doing this - okay, it does take time. I mean, people would need to know that, you know, it can be a whole day. But as I’ve said before, to me there were some benefits [laughs] because, you know, you were relaxing all day, you know. And if you are giving - but I mean to me, giving - I mean you go to your GP and he could say, “Well, I need a blood sample.” But you wouldn’t say you were giving him a gift, would you?

Elaine decided not to donate to the UK Biobank because it was a bit inconvenient at the time and she was already committed to research about diabetes.

Have you taken part in other kinds of medical research?

 

No, no, because it’s always been, you know, the diabetic centre that’s always contacted me from the hospital. And I’ve just stayed with them. But no, I don’t think I have had - although apart from maybe that biobanking, when that came through a couple of years ago. I think that was slightly different.

 

Tell me a bit more about the biobanking?

 

Well, I just, again, a letter came through but it had a fixed appointment on it and I think I was, I already had an appointment to go up and do the diabetic studies and it didn’t fit in with what was going on at the time, and so I didn’t take part. But I know that was more of a national thing.

 

I think you said earlier that you thought you were already doing enough, in a way?

 

Yeah, well, that’s - I think that’s sort of the wrong, the wrong word, because I would never say, you can never do enough, can you, really? But I think at the time there was enough going on, you know. Maybe if it had come at a different time and it was a day that I, you know, I didn’t have to change the times or - I think the times that they had written down just didn’t fit in with what was going on at that time and therefore I decided just to leave it.

For Elaine there was a 'horror factor' around the idea of donating her brain for research, even though she thinks it's a good idea. It might help research into Alzheimer's, which her mum has.

I suppose it is just, it’s the horror factor of, you know, knowing that - but to be perfectly honest, as far as I’m concerned, when you’re dead you’re dead, and that really they can have - you know, does it really matter whether it’s a kidney or whether it’s, you know, brain tissue? I mean, brain tissue, my mum has got Alzheimer’s albeit, you know, quite mild. So I think that would probably sway me to sort of say, “Well, yes.” And I think sometimes when you watch the adverts on the television, you know, about donating kidneys and other, you know, heart, whatever that it is very difficult because sometimes you sort of think, “Oh no, I just don’t want to think about it.” But if you start thinking, “Well, what if it was a member of my family that was on that waiting list, waiting for something?” You would be desperate for one to come up. So I think yes, I probably would. In answer to your question, yeah, I wouldn’t – I would probably be quite happy to give whatever.

Part of a study Elaine participated in involved keeping a food diary.

They always check your height and weight. And they usually take a blood sample, but apart from that.

 

So they don’t ask you about your lifestyle and smoking and all that sort of thing?

 

Yeah, oh yeah, oh actually yes, you do. You’re absolutely right, yes, obviously you fill in a form to sort of say whether you’re a smoker or not, how much alcohol you take. I don’t know if they do it every time. I suppose it depends what they’re doing but I have filled that in.

 

And there have been, there was one study where I had to do a food diary, for so long before. I’d forgotten about that. And I think it was sort of analysed by one of the nutritionists. I suppose it would be just to, you know, if you’re fasting and they’ll want to know what you normally have. But that was, I mean, when they had it written down it looked, I thought, “Oh my goodness, how am I going to remember to write all that you have down?” Because they were asking, you know, for quite specific sort of measurements and stuff, but actually they didn’t need it just quite so detailed as it was. Because if you have to start weighing out, you know, how much pasta you’re having, you know. But it did, as long as it was, you got a rough idea of the portion. So there was, I did do that one time.

 

So they told you that—

 

In advance.

 

--in advance, right.

 

I think I actually did, you had to do it over so many days, and I don’t think it had to be consecutive days, but you had to write down which days it was and maybe do it over a week, so maybe pick three or four days out of that week. And then I did, I think sent it off to them and they obviously give you a prepaid envelope and you send it off to them in advance, so that they can have a look at it.

 

Elaine has been sent academic papers that contain the results of the studies she has taken part in, but she finds them difficult to understand. A lay summary would be helpful.

Feedback on the results, I suppose, is the other thing, where you said you’ve been sent some results.

 

Yeah, they have sent, you know, like when one of the studies that I did, it came to an end, you know, and obviously - because quite a lot of the doctors that are there are, you know, they’re obviously research students that are over, you know, from maybe another country or whatever, under the guidance of the professors that are there. But so they obviously do the paper at the end of the research, and they do send you a copy - but [laughs] I think I’d need a degree in it to understand it all. But, you know, I’m sure if I wanted to know more information, and I called them up they’d be quite happy to do it.

 

Yeah.

 

But it’s quite nice to see the finished paper.

 

You know, and to know that you’ve helped them to do that, you know, because that’s part of their job as well, you know, these students that are - I mean they must be qualified doctors, but, you know, they’re doing these research papers, and if they didn’t have anybody to do their research on they wouldn’t be able to do their papers.

 

Do you think they could do more to - I mean it’s nice to get the actual papers, but also maybe to provide you with some lay summary of what the findings are?

 

Yes, I suppose it would be quite nice if it was, yes, more in layman’s terms. That might be quite nice just to have something that you understood a bit more but, yeah.

 

Would you still carry on doing it even if you never heard anything about the results?

 

Yeah.

 

Okay [laughs].

 

I would [laughs].

Elaine says you should go along to find out more even if you are unsure about taking part. She...

I think if they’re thinking about it - I mean, I didn’t think about it. It was, you know, came out of the blue. But if you are thinking about it, then just find out as much as you can, and I mean the more information you have the better, you know, informed you are to make a choice. But don’t be frightened to go along for - because I know, well, the one I did they certainly do pre-screenings - go along and ask them, because I’m sure they’d rather you went along and then turned around and said, “No” than you didn’t go along at all. Because I think you’ll probably find that once you do get there, and you see how friendly everybody is and how easy it is, you’ll be quite happy to carry on.

Nurses pop in to say hello to Elaine when she goes to donate. She thinks they make that effort because they appreciate her participation.

Well, I do. I mean I really like the staff that I’ve met up with. And even, because I’ve gone to quite a few of them, sometimes you will be with a different member of staff and one of the other nurses will pop in and say, “Oh, I knew you were coming in today. I’ve just come round to say hello.” And it’s lovely, you know, that they make that effort, because I’m sure they are grateful that you go in, because they need people there to do the research on. But they’ve all been lovely, all been really nice.