Jennifer - Interview 14

Age at interview: 62

Brief Outline: Jennifer has taken part in two biobanking studies as a healthy volunteer' the UK Biobank, and a research programme on Transient Ischaemic Attack (TIA) and minor stroke.

Background: Jennifer is married with two adult children. Ethnic background/nationality' White British.

More about me...

Jennifer and her husband were both invited to take part in the UK Biobank study, 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. Both Jennifer and her husband readily agreed to take part, as they felt it was a good way to contribute to greater medical knowledge. They found it very straightforward to take part, and very efficient (though perhaps so quick that it would have been difficult to ask lots of questions). The only concern was that Jennifer was told her body mass index (BMI) and her blood pressure were on the high side. She didn’t agree with the suggestion that her BMI was high, as she is slim and sporty, and when she came home and did the calculations herself she seemed to be well in the middle of the normal range. With her blood pressure, she went to her GP, and he too found it a bit high, but when she came back a week later and had it checked again by the practice nurse it was fine. 

 

Since then, Jennifer’s husband has had a transient ischaemic attack (TIA) or minor stroke, and has been enrolled in a local research project on the condition. She spotted in a leaflet that the researchers were looking for healthy volunteers to give blood samples and take part in a few tests, to act as a control group for the study. She willingly volunteered, and has also signed up some friends to take part. It only involved one visit, to give the blood sample, take her blood pressure and go through some tests of mental functioning. 

 

Again, her blood pressure was found to be a bit on the high side, and her GP is now monitoring it regularly, but she has not yet needed any medication. If she ever did need medication, she might be willing to consider taking part in a drug trial. She would be wary of being in a placebo-controlled trial (where a new drug is tested against a placebo, and the person does not know which they are taking), but it would depend how serious the condition was. Jennifer also volunteered some time ago to take part in a research project on bone density but after having one scan the project was halted, she thinks possibly because they ran out of funding.

 

Jennifer feels medical research is important, and often misrepresented in the media. She would encourage anyone who is asked to take part to consider it.

 

Jennifer got an invitation for the UK Biobank through the post. She wonders if the fact that people could choose whether to reply means the sample is a bit self-selecting.

Well, as far as I remember the invitation came through the post, and it explained what it was all about, a wide-ranging collection of health data on a large section of the population, which would be looked at over the coming years. It seemed like a useful project, and it didn’t take up a great deal of time and it was local, so. And then having decided to do it, I then discovered that lots of other people that I knew were also doing it, so yes. But I did wonder whether the population that responded was a bit self-selecting , you know, because presumably it went out, the invitations went out to everybody, and it was up to you whether you did it, yes.

Jennifer felt she would be holding everyone up if she asked questions.

Did you feel able to ask questions if you needed to?

 

Yes. I suppose the Biobank one, I mean. I said that it was all very efficient and quick. Maybe it was a bit - thinking about it - maybe it was all a bit too quick. There wasn’t really much time to, you know - you felt you were going to hold up the system if you did have a question, yes.

 

And was it like that with the other research you took part in?

 

No, because that was just individual, there was just me and the doctor.

 

Did you in fact have questions to ask when you went along?

 

Yeah, I had a couple of questions, I think, and yes, he answered them, no problem.

Jennifer explains that the UK Biobank aimed to collect health data on a large number of the population. It was quick and efficient to take part.

Well, as far as I remember the invitation came through the post, and it explained what it was all about, a wide-ranging collection of health data on a large section of the population, which would be looked at over the coming years. It seemed like a useful project, and it didn’t take up a great deal of time and it was local, so. And then having decided to do it, I then discovered that lots of other people that I knew were also doing it, so yes.

 

And what can you remember of the actual appointment when you went up for the tests?

 

Well, it was all very efficient and, you know, I wasn’t kept waiting at all. It was straight into the – well, I can’t actually remember how it, what we did first, but I mean I guess somebody must have taken your name or your number or something. But I just remember being moved round from one test or whatever to the next, and there wasn’t much waiting around, and it was all very efficiently done. It didn’t take very long at all.

Jennifer compared donating blood to taking an office collection for a gift rather than giving a personal gift.

Does the idea of ‘gift’ sound right to you?

 

Well, I’d never thought of it like that, but I suppose, yes, I suppose it is a sort of gift, isn’t it? Especially, you know, blood donation, it can make a big difference.

 

Yes. I think sometimes people find it easier to see blood donation in that light because it’s potentially giving life to someone else, whereas a research sample is kind of a bit more, what’s the word, sort of diffuse.

 

Yes, well, I suppose you could regard that more like a sort of collection for a gift or something, [laughter] you know, a collection for a leaving gift or something in the office, [laughter] rather than the personal gift.

Because drug trials are tightly controlled, Jennifer says she would take part in one. She thinks it is rare that they go wrong.

And just picking up on one thing you said that research isn’t going to do you any harm. I mean, maybe with drug trials there is potentially a risk of side effects.

Oh yes. Yes, that’s different.

How would you feel if you were asked? I mean, say you get to a point where you might need medication for high blood pressure, would you be willing to take part in a clinical trial of medication?

Yeah, I probably would, actually, yes. But, what happened at Northwick Park* is, well, it’s very rare, isn’t it? And I know things are controlled pretty closely generally, so yes, I probably would.

Yes, Northwick Park was the first time that drug had been tried on human beings.

Yes, yes. And of course they were just healthy volunteers, weren’t they? They weren’t even people who needed whatever - I don’t even know what it was for.

No, which is not the situation that those people would find themselves in when they’re asked. And would you have any worries about a placebo-controlled trial, where you don’t know if you’re getting the drug or not?

I suppose it would depend how serious the condition was. [laughter] You know, say it was for cancer, and the new drug might be potentially life-saving, I’m not sure I’d want to run the risk of having the placebo. But I suppose at the other end of the spectrum if it was for something fairly minor, yes, it wouldn’t bother me.

*FOOTNOTE: Jennifer is referring to a Phase 1 trial at a commercial research unit based at Northwick Park Hospital in 2006 when several healthy volunteers became extremely ill. Early phase studies are carried out precisely because we need to find out about possible risks and side effects before giving the treatment more widely.

Taking part in biobanking was a straightforward and efficient experience for Jennifer.

And what can you remember of the actual appointment when you went up for the tests?

 

Well, it was all very efficient and I wasn’t kept waiting at all. It was straight into the – well, I can’t actually remember what we did first, but I mean I guess somebody must have taken your name or your number or something. But I just remember being moved round from one test or whatever to the next, and there wasn’t much waiting around, and it was all very efficiently done. It didn’t take very long at all.

 

And what’s it actually involved for you?

 

Just one visit where they - there’s a sort of set of mental tests that you have to go through, which are actually the same as the ones that I’d sat through with my husband after he’d had his stroke [laughter], just to make sure that your mind’s working properly, plus taking your blood pressure. And it didn’t take very long at all. Just one visit and that was it.

 

That was it, no further visits?

 

No.

 

So pretty straightforward and easy to take part?

 

Yes, and it didn’t take very long.

Jennifer took part in a stroke study as a healthy volunteer after her husband had a minor stroke.

Well, the [stroke study name] I wouldn’t have known about if I hadn’t gone with my husband who’d had a stroke, but having been told about it, and told that they needed volunteers, I volunteered – again, not for personal benefit, really, but to, you know, provide information to help them find out more about people who have strokes, and why they have strokes, and you know.

 

And I was very impressed, I must say, with the treatment he got in the stroke study. They were very good, and did a lot of investigations. So yes, having gone with him on the first occasion, and I think the second occasion, I saw what they were doing and, you know, thought if they were having trouble recruiting volunteers I’d try and help.

 

So they actually approached you, did they, and said we are looking for volunteers?

 

Well, they gave us some information about [study name], and one of the pages said that they were, they needed healthy volunteers as controls, and if you were interested in doing it to, I think there was a number to ring, and asking you to, if you knew anybody else who might be interested, to get them to ring too.

 

And what’s it actually involved for you?

 

Just one visit where they - well, they asked me, you know, there’s a sort of set of mental tests that you have to go through, which are actually the same as the ones that I’d sat through with my husband after he’d had his stroke [laughter], just to make sure that your mind’s working properly, plus taking your blood pressure. And it didn’t take very long at all.

 

And that’s....

 

Just one visit and that was it.

 

That was it, no further visits?

 

No.

 

No, and did they take a blood sample?

 

Oh they did, yes, they did take blood samples, yes.

 

Yes, in fact they – well, they have, I don’t know what it’s called, but they have a thing where they sort of take a blood sample and it goes into different little pots for different tests.

The tests during the research showed Jennifer had high blood pressure and a high body mass index score. She was not convinced about this and had them checked again by her GP, who is now keeping a reassuring eye on her blood pressure.

Tell me a bit about the results that you were sent?

 

I don’t think we were actually sent them. I think I was given them on the day. I was concerned that my blood pressure seemed high, and they pointed it out, and said I should get it checked again, which I did, and it was fine. And I think it was my BMI was also supposed to be high, which I didn’t really agree with. And I have to say I did find - I remember very clearly, it was the first time I’ve had my blood pressure taken with one of the modern electronic devices rather than the pump-up thing - and I found it very uncomfortable, I remember that. I’ve had it done since with those electronic things and every time I find it much more uncomfortable than with the sphygmomanometer, or whatever it’s called.

 

Oh that’s interesting. So much tighter?

 

Yes, yes, I feel as if my arm’s going to burst.

 

And did you ever have any further communication from them about whether the results were unsound?

 

No, no.

 

So as far as you know they’ve got down on your records that your body mass index is unusually high?

 

Yes. Well, I think it was borderline high.

 

Have you done the calculation yourself at home and?

 

I did it when I came home, yes, and I thought I seemed to be somewhere in the middle of the normal range.

 

It’s kind of worrying, isn’t it, that it makes you perhaps doubt the quality of the information they’ve gathered.

 

Yes, I mean people’s blood pressure goes up in certain situations, but since I wasn’t going there worried about any illness or anything I wouldn’t have thought that my blood pressure would have been up for that reason. I was quite relaxed about the whole thing.

 

And as far as I can remember the blood pressure happens later on, so it’s not as if you’ve just rushed in?

 

No. That’s right, yes. It was towards the end, yes.

 

I don’t know whether it’s anything to do with different thresholds for what is normal or abnormal blood pressure. I think there is some debate about what is normal. But presumably you’ve had your blood pressure taken as part of the [study name] research as well?

 

Yes, and in fact they said it was high too. And I went to my GP, and he measured it, and he said it was kind of borderline high, and told me to come back in a week and let the nurse do it. And she did it and it was fine, and then I’ve since had it taken by the GP and it was kind of at the upper end of normal. So it is tending upwards, I think, but I’m not taking anything and it’s just being monitored at the moment.

 

And [study name] didn’t recommend that you should be treated or anything? They just said go back to your GP?

 

Yes, and get it checked again.

 

I think that [study name] tend to take a lower threshold.

 

Mm. Possibly.

 

And that’s part of what they’re finding with their research, that a lower threshold might actually be more appropriate as a cut-off point before anything should be treated.

 

But the GP is sort of keeping an eye on it, and I’m having to go back to him quite regular with something else, so he checks it every time I go for that.

Jennifer wanted people to know that it is easy to take part in biobanking.

Well, I would say do it, because it doesn’t take up much time, it’s not going to do you any harm, and it will benefit society in general, hopefully, in the future.

 

I thought it was great. There was no long waiting. They were good at sort of explaining things, and I was happy. And in fact, since we’ve been there I’ve discovered one or two people who’ve had TIAs or serious strokes who’ve been there, and they’ve all been equally complimentary about them.