Louise - Interview 21

Age at interview: 44

Brief Outline: Louise and her partner recently took part in biobanking, which involved donating samples of urine and blood.

Background: Louise is a clinical research nurse. She has a partner (BIO20) and they have two children aged 16 & 13. Ethnic background' White British.

More about me...

Louise and her partner took part in a research project in which blood and urine samples were taken. Other health measurements were also taken and the data collected were used to create a general database of health measurements. Their data and samples were also stored to be used in future research projects with their consent. 

 

There are various reasons why Louise chose to participate in this research. She knew the research also incorporated research into diabetes which is an area she has both professional and personal interest in. Louise works as a research nurse in clinical trials and also her family has a history of diabetes. Another reason is she values medical research; Louise’s own children benefitted from medical assistance when they were born and she describes her participation in medical research as a form of gratitude or payback. Louise also describes how participating in the research provided her with a ‘free MOT’. She explains how she and her partner are keen on endurance exercise and so they were interested to find out their health measurements such as blood lipids and body fat. In addition to this project they also tested wrist and ankle bands which measured intensity of exercise and Louise was very proud to break a record with the highest score (however she was training for a marathon during this period).

 

Louise discusses how it is important for her to be in support of the research aims before choosing to participate. She believes that in an ideal world medical research would be funded by a neutral government source rather than pharmaceutical companies but recognises that in reality this is unlikely to happen. Louise feels confident that there are enough ethical regulations in place for companies to follow to ensure participants are not taken advantage of.

 

Louise advises that researchers should evaluate their recruitment methods to make participation more accessible and attractive.  She explains how the poster she saw was not entirely clear, and nor was the information leaflet, and even though Louise is a research nurse she still had to ask a lot of questions. She feels that participating with her partner helped her feel informed as they could discuss any concerns or experiences with one another. Louise also suggests potential participants should be informed of the benefits of taking part like the ‘free MOT’ but suspects there may be regulations to stop this.

 

Louise explains that the project she participated in aimed to collect information about healthy...

Well, I saw a poster, which I was intrigued about because I didn’t quite understand what the poster was advertising, and I asked a colleague about it, and she, she told me it was for a medical research project, and that they were looking for volunteers to donate blood samples and do some baseline, get some baseline information about their age, height and weight and general health. And that then that information would be used to help other trials, and to build up a kind of database of people who are well, with no health problems, and people who might be invited to take part in other trials, who either have an illness at the moment or who go on to develop an illness. 

Louise and her partner both took part in a study that involved wearing activity monitors.

The original project is for bio-data collecting, getting samples which they then hold for future clinical research, but the medical team who were running the project that we signed up for originally also have links with the local university sports department, and they were testing out activity monitors, two types of activity monitors, and so they asked us if we would like to take part in that. And we thought, “Yes.” And that was good fun, actually. That was, we were asked to wear, respectively, an activity monitor on our wrist and an activity monitor on our ankles. And then they plotted the intensity and the amount of activity that we did over a period of a week, and we had to keep a diary.

 

And, actually, I could see the benefit of that, professionally, because I’m a research nurse, and I work as a research nurse with children and we do use those sort of monitors with children. So it was good, professionally, for me to have a kind of insight about the annoyance, how little things can annoy you, when you’re wearing such devices. But also one of the major issues that’s affecting healthcare strategy in the UK, at the moment, is concerned with obesity and activity levels. So if we can help in some way in them getting an idea of the best way to actually - because we don’t actually know how much different people, activity different people do, because it’s a difficult thing to record formally.  So if I could help in some way in that, that was good.

 

And it was funny, yeah. Apparently my statistics - because I was training for a marathon at the time - [laughs] so my statistics on how much I did and the intensity I did broke all their records [laughs]. I’m slightly nerdy, so [laughs] I’m really proud of that, a nerdy achievement, yeah, yeah.

 

[laughs] So that was actually a separate study that you got involved in very quickly after this one?

 

Yeah, because.

 

Sort of snowballing from one to the next?

 

Yeah. And then they saw us as ideal candidates, because they realised that we would put those devices to the test. And we did. Because one of the devices could be worn in, when swimming, one of them couldn’t, and one of them I could wear at work, when I was working within a clinical environment, on the ward, but one of them I couldn’t wear at work. So lots of things like that it was showing. And one of the devices - my partner is a very keen cyclist, but one of the devices I don’t think worked so well for cyclists but it worked, one of the other, the other device did, because of the range of movement that was involved.

 

So I think they were able to get lots of really useful information from us about the type of activities, every day activities, that those devices, the pros and cons of those devices in different situations with different activities.

Louise described biobanking as an opportunity to have a 'free MOT'.

When I found out more about the project as well I did feel that I would get some kind of intrinsic benefit from it for myself, actually, because the project team, when they take your blood sample and your, the project also involved donating a urine sample, and they weigh you and height you and measure your body fat composition - and also they, one of the screens that they do is to look at your lipids, your blood lipids, which is a different kind of fat that you have in your blood. And my partner and I are quite keen sports fanatics. So I saw it as a free MOT, [laughs] as a free baseline thing, which normally sports people would have to pay a lot of money to get hold of, to get hold of those kind of baseline fitness assessments, basically.

There is a history of diabetes in Louise's family which meant she was eligible to take part in a...

I think there was another trial that they automatically signed us - well, not automatically - they automatically asked us if we would take part in, which was a diabetic research trial, and it didn’t involve any more work than what we did at this initial blood donation session. So they took fifty mls of blood, which is about ten teaspoons, and some of that blood will already be used for this diabetic research trial. And although I personally don’t have diabetes, I have close family relatives who do have diabetes, and so I think that was what qualified me to be randomised into one group for that research trial. Whereas my partner, he doesn’t have any close relatives with diabetes and so he was randomised into a different arm of that trial. But, as I said earlier, I mean, I was quite happy to have a blood, my blood, part of my blood sample used for that.Because, although I don’t have diabetes at the moment, I know I am at raised risk of developing the illness, just because I have close family relatives who do have the illness.So there’s a real benefit there for me in the future, so an insurance policy, really.

Louise took part in biobanking as a healthy volunteer. She is interested in science and helping...

From what I remember about the information leaflet, it spoke about other volunteers taking part because they have an altruistic desire to contribute to medical science, and even if altruistic desire was linked to a family history of a certain illness, or a individual experience, or that payback thing, it was, it was presented very much as an altruistic thing. And that does motivate most people. A big part of why I wanted to take part in this trial is I’m interested in science, I’m interested in medical science, and there is an altruistic part of me. But there are other reasons why I took part in that trial as well.

Louise works in clinical research. She is both professionally and personally interested in...

And because I work in clinical research, but primarily I like the idea of taking part in a biobank, I like medical research that is about building up information about how people are at the moment, in terms of their health, and their fitness and their wellbeing. This project didn’t involve any investigational drug products and I also knew that the research team who were behind this research project were closely linked to some diabetic, diabetes research, and because I have a professional interest in diabetes, but also a personal interest in diabetes because diabetes is a huge issue within my family. So that’s quite a big motive for me to take part in research.

Louise's nursing colleagues have asked her what it is like to be a 'guinea pig'. She thinks...

I’ve had nursing colleagues asking me about what it’s like to be a guinea pig. So we need to get over that. We need to get over that guinea pig thing. And I know that the UK regulatory authorities, a lot of what they do is aimed at getting over all that and protecting individuals. But I know that as an insider. I know that as somebody who works on the inside. And we have to take that message to the media, and somehow - maybe we need to employ somebody who’s very good at PR. I know political parties get slammed for having spin doctors, but maybe we need a spin doctor who knows how to play the media at their own game, because I don’t think we’re going to win it otherwise. 

Louise participated as a way of repaying the care her children have received throughout their lives.

It’s also a bit of payback, because both my children required a lot of medical support when they were born. So anything, even if it’s small, to help contribute towards the development of medical knowledge is a good thing, I feel.

 

When I was younger, I was very much against animal research, but now I’m so grateful for it, because I know with my own children, certainly my eldest child may not have survived her early days, if it hadn’t been for the development of medical interventions that had come about through animal research. She was born with a - she’s fine now, perfectly normal, healthy teenager - but she was born with a life-threatening condition and needed surgery and intensive care and a lot of help. And I can remember asking one of the surgeons how they developed the skills and the technology to operate on such a tiny baby, and he said, “Well, the veterinary hospital is just across the road.” And I thought, “That’s it, really.” And it’s only when you’re faced with that reality that you realise, “Actually, this is very, very important.”

Louise's views about animal research have changed as she has got older. She used to be against it...

My views on animal research have changed as I’ve grown older. When I was younger, I was very much against animal research, but now I’m so grateful for it, because I know with my own children, certainly my eldest child may not have survived her early days, if it hadn’t been for the development of medical interventions that had come about through animal research. She’s fine now, perfectly normal, healthy, teenager. But she was born with a life-threatening condition and needed surgery and intensive care and a lot of help. And I can remember asking one of the surgeons how they developed the skills and the technology to operate on such a tiny baby, and he said, “Well, the veterinary hospital is just across the road.” And I thought, “That’s it, really.” And it’s only when you’re faced with that reality that you realise, “Actually, this is very, very important.” And another family member has Parkinson’s, and he’s desperate for a cure. And a lot of the research for the cures for something like Parkinson’s will come through animal testing. Certainly all the oncology drugs - you do not want to be testing out those on first-in-humans.

 

And so a lot of my younger views were born out of naivety, really, an ideal naivety. I tend to qualify it that I’m not happy about animal research for things that we can live without, such as make-up and shampoo. And once something has been established as doing the job perfectly well, such as make-up or shampoo, what further testing do you need? But developments in medicine are different. And I work with enough people in this field to know that the people who do - although I’m not involved in any kind of animal research at all - but people who working in that area are not involved in it out of any kind of personal sadistic gratification. And a lot of them, I’m quite sure, are quite caring and doting on their own pets, and caring and doting on the animals in their professional care. The photos of dogs chain-smoking, again - well, I don’t smoke, so part of me thinks, “Why are we testing on animals for something that you shouldn’t be doing anyway?” But that question is something we should be putting to people who smoke. And the fact is, the fact that those animals were put through that meant that scientists were able to develop interventions to help develop cures for cardiovascular diseases and lung cancers that were brought on as a result of smoking.

Louise gives an example of how the media often misrepresent research findings.

The media really annoys me [laughs]. I don’t know what we can do about it. I read a lot of Ben Goldacre*. And it’s a bit like the internet, isn’t it? And it’s not just about medical research. It’s about every flipping subject that the media touches. There will be some things, and I mean there’ve been some stories in the media that I’ve had an insight into, either professionally or just for whatever reason, and I’ve just, “That just isn’t the case at all”. How they get away with the misrepresentation? So, sometimes I wonder should it be regulated? But, any time a politician puts his head above the parapet and says they’re going to start regulating the media that’s their job gone, basically. So, one of the things that we try to do in research is try to be completely honest and up-front with everyone, and that’s a requirement of UK law. And that’s good. And the media can be a force for good as well, you know. Whistle-blowing is a force for good.

 

But there’s so much distortion in the media. A good example would be I read this article that said, “Women with slim thighs are more at risk of cardiovascular disease and heart attacks than women with fat thighs.” I was thinking, “Okay, what are they talking about here?” And what it was that they were talking about - but they didn’t explain this in the article, I had to really think about, “How did they get this? Because that contradicts my clinical understanding of the risks associated with obesity.” But what they were misrepresented - I don’t know if the person who was writing the article had misinterpreted it or misunderstood - was the body weight distribution thing. A lot of women tend to carry their weight on their hips but have relatively slim abdomens and waists, and that’s a lower risk factor for a cardiovascular disease. Whereas a few people who have incredibly slim legs, but carry all the weight around their middles are at a much higher risk of cardiovascular disease, diabetes, because all the obesity is centrally located. But they’ve got beautifully slim legs. And that’s what they were referring to, but that was not explained. The headline was, “Women with slim legs at greater risk of--.” You know, so it’s a perfect - you know.

 

* FOOTNOTE' Ben Goldacre is a doctor and broadcaster who writes about the way science gets misrepresented - see http'//www.badscience.net/

Louise discusses how some people she knows would donate some organs, but not others, such as eyes...

Would you give organs for research as well as for transplant?

 

Yeah. Yeah, I would, yeah. But I know it always surprises me the strength of feeling that people have about that, you know, as I don’t have that kind of strength of attachment to my body after death [laughs]. And so because I don’t have that, I find it sometimes difficult to fathom. But people do, you know. People feel extraordinary. And I know even within my own family, some of my family members are very happy to donate some things but not other things. Eyes is a good example, lots of people can’t bear the idea of donating their eyes and that kind of thing. 

Louise found that the quality of information she got depended on the competence of the staff she...

I got a gist of the trial from the patient information leaflet, and, but even as someone who works in clinical trials, I still feel unconfident about articulating the details of what that study is really about, which I know will reflect partly my ability to interpret that data, but I suspect it also reflects the information sheet. It wasn’t crystal clear. I had to ask a lot of questions. And I did, for example, think that we would be getting a future date to go back to see how we were faring against a kind of baseline, even if that future date was like ten years’ time or something. But that was a misunderstanding that I went in with. Some of the patient information leaflets, they’re quite cumbersome, but they have to be because of the way research is regulated and the level of information that is required, and that information sharing, I guess, can only be, has to be a staged process. So from, you see the poster, you make verbal enquiries about it, you might go on the internet to research the, the project, and then you might be sent an information leaflet, and then you actually arrange an appointment to go in, and talk more with staff face-to-face. And at any point, you can say, “No, I’m not interested in this.”

 

And the face-to-face explanations that you got, when you finally got there, did you feel those were good?

 

That varied according to who I was talking to, and the level of competence of the staff that I was talking to. But that’s often the way, and it’s - the internet resource was very good. There was a lot more depth there. And projects like this you often have to go back and re-read things. And also when I talked to - because I took part in this project alongside my partner, we were able to sort of talk between ourselves as to how we’d understood various aspects of the day and everything.

With a family history of high Cholesterol, Louise thought being given the results of her...

And it said that if anything showed up that they - well, they asked our permission to contact the GP, and then there was another clause saying that if anything showed up that was, I think, basically, life-threatening they would want to contact the GP then. They were clear to point out that they were not screening for DNA, genetic illnesses, because that has insurance implications, and there were certain other illnesses that they weren’t screening for because there were insurance implications. But a lot of the bio-markers that they were looking at can be indicators of early disease such as diabetes or cardiovascular disease, or even cancer. And if any of those had shown up they would have notified us. We were sent out the results of the general blood test, and things like the lipids, and actually that was very useful because, apart from the diabetes in my family, there’s a high risk of cardiovascular disease and high cholesterol. But that information can be quite difficult to interpret, and even as someone who works within the medical field, I found some of the readings difficult to understand. They did explain, the information that came back with it did explain quite well what the different readings meant, and basically they were in the normal range, so there was nothing to worry about.

 

Was there someone you could have contacted if you were unsure what it meant or worried?

 

Yeah, I could have gone back to the research team, or I would have been quite happy to go, to have gone to my GP, but not everybody would have felt that about their GP.