Claire - Interview 06

Age at interview: 52

Brief Outline: Claire was invited to take part in the UK Biobank, and was happy to take part. She is very interested in supporting medical research.

Background: Claire works as an NHS manager in a big acute trust. She is single. Ethnic background/nationality' White British.

More about me...

Claire received a letter inviting her to take part in the UK Biobank, a study which aims to collect samples of blood and urine, measurements such as height, weight and blood pressure, and lifestyle details such as exercise, diet, smoking and alcohol from half a million people nationally. By linking this information with future health records scientists hope to make progress in understanding causes and risk factors for many types of disease.

 

Claire works as an NHS manager in a big acute trust and she is a very keen supporter of medical research. She was interested to take part, and felt it was almost a privilege to be asked, so she quickly said yes. She booked an appointment on a Saturday morning, and put a cake in the oven before leaving the house, expecting it would be a short visit. It was only when she got there that she realised the information sheet said she might need to be there for up to two hours. At the time, she had not felt she needed to read the information in great detail, because she trusted completely that it was a good project to take part in. It might have helped to have a short summary on page one to draw her attention to the length of the appointment – but then again, that might have put some people off, which she feels would be a shame. The consent process on the day was very thorough anyway, and it was clear throughout that you could opt out of certain questions or tests if you wanted to.

 

As it turned out she was only there for about an hour and a half, so she got home before the cake burned. Claire enjoyed doing most of the tests, a bit like doing a quiz. Some of the lifestyle questions were quite personal, but she took the view that it was important to be completely honest if the research was to be accurate, and was confident anyway that it was all anonymous. The only thing she found more difficult was having to give a urine sample into a tiny pot. She was not able to do one test involving her eyes because she had recently had laser eye surgery. Having a print-out at the end was useful, although she remembers being slightly affronted at being told that her weight was rather too high.

 

She has told lots of friends and colleagues about the study, and would encourage anyone to go along. The hospital where Claire works is experimenting with an ‘assent’ form, where they will ask all patients who come through the hospital if they would be happy to be approached about specific research projects in future. She feels this would be a great way to increase the pool of people available to support medical research and help others in future.

 

Claire was honoured to take part in the UK Biobank. She says its aim is to find out about factors that affect health.

And they ask you all sorts of questions about yourself, and there are some where you think, “Oh, God. This is very personal.” And then you have to remind yourself that this is about research, that you have to have confidence in the confidentiality and that actually, if enough people answer these questions we are going to get a picture about our population, and that if we can do that, we can understand what the different factors that influence their health and their lifestyle are doing. And it will better enable us to improve the health of the population, which of course is what research is all about. So it is an honour to be involved in doing something like this.

 

So they ask you, you do the forms, you do the interactive bit. Then I thought it was all over, and in fact that’s, you find out you’re only half-way through, because then there’s a whole series of other physical things. You have to give blood. You have to pee in a little pot. You have to go and do eye tests and breath tests, and they put your foot goes into an ultrasound machine, so they measure the density of your bone, and they give you some results as you go along. And you’re seeing different people for each stage. 

Claire only realised when she arrived at the UK Biobank that her appointment might take up to two hours. She had to be home in time to take the cake she was baking out of the oven.

And so on the morning I - it was an early, made an early morning appointment. I did as I usually do on a Saturday, I whipped up a cake, a rich fruit cake, whacked it in the oven and then went off to the appointment. And as I arrived, drove to the appointment, which is only about ten minutes’ drive away, I read on the paper where was I supposed to go, and of course I saw it said, “You’ve got to allow two hours for this.” So I thought, “No way is this going to be able to take me two hours”.

 

But of course I’d got my cake in the oven, so I knew couldn’t take very long and so I knew I was under pressure, and it probably would have been better if how long you’ve got to give was a bit more prominent. On the other hand, I wonder, if I’d have read that, whether I would have done it, because I thought I was going to pop along, give a blood test, answer a few questions and whip away. And if it said two hours would I still have done it? So all in all for me, being a person that rushes around doing everything, it happened to work out for the best. And at no stage did I have to wait for anything, although I did talk to one woman at the end who said to me, “How long have you been here? Because I’ve been here a long time, two and a half hours.” And I said, and I hadn’t because I’d whizzed through the whole thing, so I was in there for an hour and a half, and so I got home and got the cake out, which was fine.

Claire was delighted when she received her invitation to be part of the UK Biobank, and didn't feel she needed to read lots of information about it.

A letter arrived in the post and it said that there was a national piece of research going on and it was all about the biobank. And because I work in a large teaching [hospital] organisation in the NHS, I know [something] about research and I’d learnt about the biobank.

 

It’s one of the aims of academic health science centres to understand more about the population and the impact of [activities and interventions] on [patients and] the population. So I’m, I’m very interested in this topic, so I was delighted to be invited. So I didn’t really read any of the enclosures. I just did, carried on doing what I was doing, but I did ring up and make an appointment, and as it got nearer the date, I couldn’t make that date and so I rang up again. They were absolutely fine about me changing the date, so it was very, very easy to make the appointment. And I noticed, obviously, that is was in [local town] so I knew when I needed to get there. 

Claire thought that the important facts people need to know should be summarised on the first page of the leaflet. She said, 'if it isn't on the first page, it ain't going to get read'.

Do you think the people running the research project would be worried to think that you hadn’t read all the way through the leaflet?

 

No, because I know what it is. At the end of the day when I get there they have someone there to talk you through it, you have to sign something, you have to sign to say you know all about it, you have to sign, go on the screen and it won’t let you progress until you’ve said that you’ve signed it, you accept it and you sign it. So no, I don’t think they - I mean, they give you that information to get you there, and half the people are going to get there just because they know a bit about it like me and don’t mind or are happy to. And, presumably, the paperwork is to convince another proportion. And some proportion are going to throw it away whatever it says.

 

Do you think, when you talked about it not being on the front page, would there be any benefit in having like a sort of a one-page summary as well as more detailed information?

 

Yes, you see I just think anything that comes through the post, if it isn’t on the first page it ain’t going to get read. So to enclose a leaflet, which I think it did, is great, so yes, I think - I mean how you achieve this is very difficult.

Claire thinks people love having the chance to be altruistic and help others. She would probably take part in other types of research.

Have you ever taken part in any other medical research?

 

I don’t think so, but I would always be happy to.

 

Because I think, in my experience at work and personally, people like to volunteer. I’ve been in the NHS for thirty years and people are always looking at ways of giving things. I think people love to have the opportunity to be altruistic, and we don’t make enough of that and so I guess I’m being just part of the general population. 

Claire felt that some of the questions for the UK Biobank were very personal. She was confident her answers would remain confidential and decided it was more important to be honest about them.

So I whipped in and went straight upstairs and instantly introduced myself, and I was amazed actually, because it was a big open hall and, but terribly quiet and organised with loads and loads of people around, and enough people instantly to be able to greet you, so there was no waiting at all. They made, they were really nice people all the way through this whole experience, the people were lovely, and they said, they explained what you needed to do. They explained that it would be, you would have to fill some forms in, and then you go and sit down, and then you have to, they show you on a mock-up one, that you’ve got a button that you press, and that you’ve got an interactive screen in front of you. And then at one particular point there’s some headphones you take off and put on, and they said that lots and lots of people would be doing this and indeed, you can see them all the way down the thing, all sitting in a row. And so then they said, “Are you ready to get started?” And they give you some practice ones. And so then I got going.

 

And they ask you all sorts of questions about yourself, and there are some where you think, “Oh, God. This is very personal.” And then you have to remind yourself that this is about research, that you have to have confidence in the confidentiality and that actually, if enough people answer these questions we are going to get a picture about our population, and that if we can do that, we can understand what the different factors that influence their health and their lifestyle are doing. And it will better enable us to improve the health of the population, which of course is what research is all about. So it is an honour to be involved in doing something like this.

 

It didn’t matter what I said as long as I was honest, when it’s so easy on questions about your sexual health or your immunisation or all those sorts of things to think, “Oh God, I don’t want to say this.” But all the way through it they let you have bits where you say, “I’d rather not answer these questions.” So it’s fine, I think, to take part.

 

Yes, it’s very tempting to exaggerate where you know it’s good to do it and underplay it when it’s good not to, like the alcohol. But I just thought, “What’s the point of doing research and not being honest?” And, and, as I say, you have to you have to think unless we give honest answers here it’s not going to help the research. And when it comes to things like your blood test, then you can’t fake that, so why fake the other parts of it, which you could do. So I was actually completely honest, and although I - I had a phase in my life when I was very active, I’m not now. So it would have been nice to have been asked, “Has your exercise pattern changed over the last x years? And are you doing more now or less now?” But it didn’t. So it isn’t an exercise, it isn’t - you have to take it on the spirit that it, no one’s testing you. This is about your lifestyle that, and therefore it’s important that you give a reasonable answer to, that represents your lifestyle.

 

This issue of trust in the confidentiality, how far do you think that’s because you work where you do that you feel more trust in how the data will be used?

 

I suppose it is, but you wouldn’t turn up if you didn’t trust that it would be used in the right way. Those people that don’t believe in it would be not the people that would participate. So to get them through the front door, you’ve got to have people - mind you, I didn’t know it would be asking the level of detail it did until I did get in the door. So - but then, as I said,

Some of the UK Biobank questions were quite personal, but Claire is confident that her privacy will be maintained. She is not at all worried about her data being shared with researchers.

And they ask you all sorts of questions about yourself, and there are some where you think, “Oh, God. This is very personal.” And then you have to remind yourself that this is about research, that you have to have confidence in the confidentiality and that actually, if enough people answer these questions we are going to get a picture about our population, and that if we can do that, we can understand what the different factors that influence their health and their lifestyle are doing. And it will better enable us to improve the health of the population, which of course is what research is all about. So it is an honour to be involved in doing something like this.

 

I bet some people would think, “This is big government being snoopy.” In fact, when I’ve talked to people about it they’ve said, “Why would anyone want to have all that level of information? Doesn’t it concern you?” It doesn’t bother me a jot. But then I’m not one that doesn’t like - I wouldn’t give my e-mail address to people when I’m buying something - but I don’t really mind about, you know, cards and – not, I mean I don’t mind about having population-based cards. I think things that help with our security and identity can be a very positive situation, although I know that isn’t a wide, you know, it isn’t - it’s probably as widely held view as the other way, which is that this is infringement on your civil rights and liberty. So I go with if I’m asked to help, if I can I will. And if there’s something that can be in it for me as well then that’s great.

The staff at the UK Biobank were lovely to Claire and explained everything she had to do.

So I whipped in and went straight upstairs and instantly introduced myself, and I was amazed actually, because it was a big open hall and, but terribly quiet and organised with loads and loads of people around, and enough people instantly to be able to greet you, so there was no waiting at all. They made, they were really nice people all the way through this whole experience, the people were lovely, and they said, they explained what you needed to do.

 

They explained that it would be, you would have to fill some forms in, and then you go and sit down, and then you have to, they show you on a mock-up one, that you’ve got a button that you press, and that you’ve got an interactive screen in front of you. And then at one particular point there’s some headphones you take off and put on, and they said that lots and lots of people would be doing this and indeed, you can see them all the way down the thing, all sitting in a row. And so then they said, “Are you ready to get started?” And they give you some practice ones. And so then I got going. 

Claire felt 'affronted' to learn she was a bit overweight, but it was useful to know where she was in relation to the normal range.

What kind of results did you get, because they give you a print out—

 

They do.

 

--don’t they?

 

They do. I only a few weeks beforehand had had my eyes lasered, and so I didn’t realise it would have any impact, because of course I didn’t realise in advance what it would involve, because I hadn’t read all the paperwork properly. But, so I didn’t do the eye test piece, because they can’t puff things onto your newly surgically done eyes. But they gave me my blood pressure, my venous, you know, the rate at which not just your blood pressure but the rate at which the blood goes through, your weight, your bone density.

 

So they give you some good, you know, basic health data, and they tell you whether you’re - oh yes, I remember this. They give you the size of your waist and then they say, you know, ‘obese’, ‘average’, you know, ‘not’, and I’m sure I was something which I was affronted by, something - it was like so many inches, it wasn’t saying verging on the obese, I exaggerate, but it was something like that, and I thought, “Bloody hell.” You know? Because like I know I’m a bit overweight but not, I wouldn’t have thought that much. Anyway, it just made me laugh, really.

 

So it gives you good good feedback, body mass and all that stuff they give you, and ranges that you should be within. So it’s useful.

 

Yes, not just the result, but also--

 

Not just the result, but it gives you whether or not you’re an outlier.