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Julie - Interview 15

Age at interview: 45
Brief Outline: Julie has taken part in several research studies, including donating blood and urine samples to a local project to improve identification and treatment of women with pre-eclampsia in pregnancy. She also took part in the UK National Biobank study.
Background: Julie is an educational consultant and writer. She is married with a 3-month old baby, and is taking a career break to look after him. Ethnic background/nationality' White British.

More about me...

Julie feels very strongly about the importance of taking part in medical research and helping other people who have particular conditions. She has been a blood donor since she was 18, and carries an organ donation card. Her willingness to be involved in medical research is all part of the same belief system of giving to others.

 
Julie and her husband first got involved in research together when they were at a hospital appointment, and saw a poster asking for people willing to take part as healthy volunteers in a study of blood oxygenation levels in the heart. They found it very interesting, though it was also more demanding than Julie expected. It involved spending 90 minutes in an MRI scanner, doing various breathing exercises, and having two cannulas (fine tubes) inserted into veins. 
 
Then they were both invited to take part in the UK Biobank, a study which is collecting 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. Julie and her husband were very interested, and had no problem agreeing to take part. They found it all very easy to do, although Julie remembers it being quite challenging answering questions about her exercise patterns. It made her more aware of her weight and the need to do more exercise, so it has had an unexpected personal benefit for her. She is happy for her samples to be used in any way in future, and trusts the professional staff involved to look after her data carefully.
 
Julie’s new baby was conceived using egg donation and IVF, and this has made her feel grateful to the egg donor and to people who have previously taken part in studies which have led to these treatments being developed. As a result she feels even more inclined to take part in research, and when she became pregnant asked if there were any studies she could join. She was sent to see the research midwives working in pregnancy studies, and was offered the chance to be in a study where blood and urine samples are being collected to help improve the diagnosis of pre-eclampsia in pregnancy and better understand its causes. Later in pregnancy Julie was admitted to hospital with high blood pressure, and the research midwives came to see her – both to collect more information about her but also to check how she was doing. She feels the relationship with the research midwives has been very positive and that she has been treated as part of the team. She was particularly surprised and pleased to hear that there were already some promising early results from the study. 
 
 

Julie donated urine as well as blood samples during her pregnancy. These were usually done...

Julie donated urine as well as blood samples during her pregnancy. These were usually done...

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So you actually asked them if there was any research going?
 
Yes.
 
And what did they tell you when you asked that?
 
So the clinic sent me to see the research midwives. The research midwives thought for about 10 seconds and said, “Oh well, here’s one that you’re qualified for.” And I came into the category of a slightly higher risk pregnancy because of having had IVF. And the research midwives were terribly apologetic that this would involve an extra blood test and an extra urine test every month, and a bit of going out of the way on my part, and I reassured them that I was very, very happy to do all of this. And in fact the blood tests could usually be done when I went to the antenatal clinic, so there were only a few occasions when I had to have an extra blood test.
 
And that involved an extra visit, did it? You had to go off again to the hospital?
 
Sometimes yes, sometimes no.
 

At a routine appointment at the high risk pregnancy unit, Julie asked if there were any research...

At a routine appointment at the high risk pregnancy unit, Julie asked if there were any research...

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When I became pregnant I had to go to a regular clinic, a regular antenatal clinic, for high risk pregnancies, and so I actually asked them if there were any research projects I could volunteer for. I have done this kind of thing before. I’ve been a blood donor since I was 18 years old. I carry a donor card as well, and my husband and I have together participated in a few research projects such as MRI scans of the heart, which was quite hard work, but fun and satisfying. So I was, I was already aware of the value of different kinds of medical research, and because it had taken me so much help to get pregnant, if I could possibly put back into the system I wanted to.
 

Julie felt that the information sheet contained everything she needed to know.

Julie felt that the information sheet contained everything she needed to know.

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The information was just long enough to give me everything I needed to know, and just set out very clearly that this was looking at...So the information was full enough to tell me everything I needed to know about participating in the project, and didn’t take particularly long to read. And it explained that it was looking at better information on the causes of pre-eclampsia and identifying pre-eclampsia. And at the beginning of my pregnancy I only vaguely knew what pre-eclampsia was, and so I got a slightly better understanding of the condition through reading the information I was given.
 

Julie participated partly because she felt it was the right thing to do and partly because she...

Julie participated partly because she felt it was the right thing to do and partly because she...

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Well I’d describe my own religion as I’m a liberal religious humanist, and I think that does affect my thinking. So it’s a moral stance, but I’m also an incredibly nosy person [laughs], and so just the curiosity factor of what’s going on in these research projects. And, and it does make you feel very special and very pampered when you do these kinds of things, and the researchers express their thanks to you. And I don’t actually know many people who have done this kind of thing themselves, and so I do feel, I do feel a little bit of one-upmanship, you know, and even, even with giving blood people say, “Oh, you’re so brave”, which of course you’re not. Yes, it’s a special thing to do.
 

Julie says that one of the personal benefits you get from taking part is a “warm fuzzy feeling”...

Julie says that one of the personal benefits you get from taking part is a “warm fuzzy feeling”...

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The benefit to myself wasn’t the original impetus, for example to become a blood donor, but I soon became aware of the quid pro quo, the benefits that you get back. And because I’ve had a problem with anaemia through all of my adult life, of course going to give blood regularly was one way of keeping an eye on that. And when I took part in the MRI scans looking at blood oxygenation levels in the heart, I’ve always had a faint worry in the back of my mind that my father died of heart disease, and he was already ill with heart disease by the time he was my age, and so by having a free MRI of my heart I got a free health check. So I am aware of the benefits for myself, though some of them there’s no immediate, some of the research projects there’s no immediate obvious benefit other than, other than a warm fuzzy feeling that you’re doing something which contributes to health care and research generally.
 

Julie thinks animal research saves lives. She gets angry with animal rights protestors who use...

Julie thinks animal research saves lives. She gets angry with animal rights protestors who use...

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I’m one of those people who actually went on a demonstration in support of the building of a new animal research lab, and I get very angry with these very emotional anti-animal research protesters, who use out-of-date pictures and out-of-date material to protest against animal research. And I believe those animal researchers who say that it’s only with the greatest reluctance that they use animals to research something, invasive research on animals, but of course animal research also saves animal lives. So I do have a pro-research stance, and I’m aware of that. I also feel the same way about stem cell research and embryo research, and in fact the, the eggs that we couldn’t use for IVF our self we did actually offer those for research purposes. Because where does life start? I’m not sure - I’m not sure I can answer that question in any meaningful way. But can research on early-stage embryos help medical advances? Yes it can. That’s more important.
 

Julie knows someone who would not like to donate his corneas when he dies. This helped her...

Julie knows someone who would not like to donate his corneas when he dies. This helped her...

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And are there any bits of you that you wouldn’t want to give for research, or anything that they can use you’d be happy with?
 
I’d be happy to have everything used, and as I said I’m thinking of donating my entire body. I do know of one person who didn’t want to donate his corneas and I didn’t understand that, so that helped me to realise that actually I’m happy to donate the lot. If you can use it, go ahead.
 

Julie felt moved by a television programme showing a service of thanks held every year by a...

Julie felt moved by a television programme showing a service of thanks held every year by a...

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I’ve carried an organ donor card all my adult life and I’ve made sure that it was kept up-to-date regularly as well. And more recently I’ve been thinking about donating my body to medical science. I quite like the idea of having my joints harvested. I recently saw a programme on TV about how the medical students at one medical school hold a service of thanks [briefly tearful] - it’s so touching - hold a service of thanks every year for the families of those who have donated their bodies, and I just think that’s, that’s so touching, and it makes me even more inclined to do it. Yeah, I know that doctors and surgeons, they have to train somehow. I don’t have any plans for my body after my death, so if they can make use of it – 25'09 coming from an academic background myself, one of the things that I’ve realised is that when you get trainees who are being supervised that sometimes you get an even better level of care, because you get a young enthusiastic trainee who’s very interested in their work, and they’re being very carefully supervised by a more experienced person as well. And so I know that there, some people are suspicious about for example having a medical student involved in their care, but sometimes of course it can mean that you get an even better level of care.
 

Julie felt claustrophobic when she was in the MRI scanner.

Julie felt claustrophobic when she was in the MRI scanner.

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When I’ve taken part in the slightly more involved research projects like MRI scans of the heart, I feel incredibly proud that I’ve done that, because that wasn’t an easy one, and it involved 90 minutes in an MRI scanner and two cannulas, and various breathing exercises, and the claustrophobia which goes with being inside a scanner, and so on. And so yes, I thought, “I’m putting myself out to do this, but I’m very happy to do it.” And somebody’s got to do it; somebody’s got to be a healthy sample in a research project.
 

Being asked to estimate how much she exercised in the previous week made Julie reflect on her...

Being asked to estimate how much she exercised in the previous week made Julie reflect on her...

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So I was invited by letter to participate in the UK Biobank. It’s the kind of thing that I agree to take part in, as long as it’s not too invasive, because we were trying for a baby at the time. I don’t think I’d ever take part in a drug trial, unless it was something that I already knew I was suffering from. Just out of interest - what was this study, what was it for, who else was participating, feeling, feeling a little bit proud to have been invited to participate, although now I understand that that’s random, and it’s led to some interesting conversations with friends who have always, who have also participated.
 
What kind of conversations?
 
One of the interesting ones was about sexual history and how many sexual partners you’ve had. And I’m not saying any more on that one [laughter].
 
[Laughter] Yeah. There are some quite personal questions—
 
Yes.
 
-- in the UK Biobank aren’t there?
 
Yes.
 
Yeah. Were there others that you found - I won’t say difficult - but challenging, maybe?
 
Yes, it was challenging to answer questions about how much exercise I did every week, and I tried to answer honestly, and I felt guilty at the same time, thinking, “This is pathetic. I really need to do more than that.” So participating also raised my awareness.
 
Well, the drinking wasn’t a problem for me, but I have changed my exercise behaviour since then, and it was one of the things that contributed into making me think about how much I exercised.
 

Julie felt her privacy was respected when she was being measured and weighed at the UK Biobank.

Julie felt her privacy was respected when she was being measured and weighed at the UK Biobank.

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Did you worry about whether anybody might be passing behind you and looking over your shoulder?
 
A little bit, but because I can work quickly on computers it wasn’t a problem, and when it - if I remember rightly, I gave a blood test and I was weighed and my height was measured, and that was sufficiently private not to feel embarrassed. Slightly bizarrely, the office suite where it took place was on the first floor of a large local shopping centre, which surprised me, but why not? 
 

Confidentiality is important to Julie. She would be worried if her data fell into the wrong hands...

Confidentiality is important to Julie. She would be worried if her data fell into the wrong hands...

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I think my personal data and medical information getting into the wrong hands is a general worry, mainly because of confidentiality issues. I’m not entirely sure if anybody would be able to use that data to harm me, other than to invade my privacy. But yes, I do think the security of the data, privacy, anonymity - where that’s appropriate in a study - I think they’re very important.
 
But you obviously felt confident that it would be handled well or you wouldn’t have taken part, I guess?
 
Yes, yes, these people are professionals. Yes, mistakes are made. Had the nature of the data - for example looking at mental health - had the disclosure of the findings been able to have had a negative impact on me, I might have asked for more information on that area, on the security of the data, at the start of a project. But giving blood and urine samples when you’re pregnant, that really doesn’t worry me at all.

 

 

For Julie misrepresenting the results of the research would be the biggest abuse of her trust.

For Julie misrepresenting the results of the research would be the biggest abuse of her trust.

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As a participant - I think the biggest way that my trust could be abused would be by misrepresenting the results, being dishonest with the data. I think that’s what would bother me most. You asked me before if, how I would feel if samples I’d already given for one project where then used in another project. Well, of course that very often happens with data, that the data of an earlier study contributes to a later study. I actually feel very positive about that as long as it’s an honest study. I actually have a very deep interest in alternative medicine and I use things like homeopathy myself, and I understand enough about it to know that scientifically it doesn’t make sense, but personally, anecdotally, I’ve used it a lot. And so I see it as a balancing act, that by taking part in hard-core evidence-based research we can get better information which does make gentler approaches more effective.
 

In a pregnancy study Julie developed a trusting relationship with staff. At the UK Biobank...

In a pregnancy study Julie developed a trusting relationship with staff. At the UK Biobank...

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And towards the end of my pregnancy I did actually end up in hospital feeling very unwell with a pre-eclampsia scare, and they thought I was at the start of developing pre-eclampsia, and so the research midwives actually came up to see me on the ward and say hello and enquire after my health. And luckily I was well enough to go home for another six weeks. I didn’t develop pre-eclampsia but I did end up in hospital again, right at the end of the pregnancy, when the due date had already passed, with high blood pressure. Again, the research midwives came to see me again, and we had a joke that they were getting plenty of useful data from me.
 
Is there anything you want to say about sort of that relationship and their manner, and how that’s contributed, helped you feel confident in the research?
 
Right. The research midwives were obviously very experienced, very reassuring. They were a bit apologetic about me having to have extra blood tests and the inconvenience that might cause. And I knew them by first names, they knew me, they came to visit me when I was admitted, they came to visit me after I had the baby, so it was a very pleasant relationship, and they’re nice people.
 
People often talk about the trust or otherwise that they have with the research team. Did you feel that you were able to trust them?
 
I think it’s more difficult to talk about trust when you’re taking part in a very large generalised study like UK Biobank. But at the, at the sharp end, being a participant was a very efficient, pleasant process, the people you dealt with were very nice. Where there’s been a more intimate relationship, like with the research midwives, they were very nice, they were very supportive, they were very caring of me in a high risk pregnancy, and shared our joy when our healthy baby was born. 
 

Julie thinks it isn't always possible to find out research results nor might she understand them....

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Julie thinks it isn't always possible to find out research results nor might she understand them....

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I don’t think researchers can always tell people the outcomes of the research, and I think certainly in medical research projects it might just be way too complicated to understand, I think. I think just knowing what you’ve done is making a difference is very often enough. Every time I’ve given blood I have no idea how that blood has been used or for whom, but I just know that my donation and everyone else’s donations are sorely needed.
 
Of course you can’t always get feedback on the results of the research, and I think lots of medical research trials the results would be way too complicated for me to understand. I just think it’s enough to know that my participation might have helped to make a difference. Every time I’ve given blood I’ve no idea where that blood donation has gone, but I just know that all of those donations are sorely needed.
 

It was a bonus for Julie when the researchers told her that the study she took part in had...

It was a bonus for Julie when the researchers told her that the study she took part in had...

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Because I was so heavily monitored during my pregnancy anyway, going to at least, the high risk clinic at least once a month, I always had plenty of information available, but yes, I did ask a few extra questions of the research midwives. And at one point they told me that they, they thought they had already identified one better marker, an indicator of the onset of pre-eclampsia, and I found that incredibly interesting. And I felt really pleased, as well, that my very minor participation might already have helped.
 
So getting the information about the new marker for pre-eclampsia was a kind of bonus, really, not something that you’d expect to get necessarily?
 
No, I didn’t expect to get any information that soon, half-way during the pregnancy, that they thought they had already identified a better way of identifying the onset of pre-eclampsia. It didn’t help me in my pregnancy this time, and it probably won’t directly benefit pregnant women for a few years yet, but it was a bonus to think, “Wow, they’ve already discovered something.”
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