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Sabiha - Interview 19

Age at interview: 53
Brief Outline: Sabiha took part in a trial of breast screening for younger women (under 50). More recently she volunteered for a trial of cholesterol-lowering drugs but was not eligible because her cholesterol level was too low.
Background: Sabiha is a medical secretary and a counsellor. She has 2 children aged 26 and 17. Ethnic background/nationality' Pakistani.

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Sabiha has taken part in several research projects, and is always keen to take part in anything which she thinks may benefit other people as well as herself.
 
Some years ago she was invited to take part in a trial of breast screening for women aged 40-50, having been selected at random from her GP’s list. Normally women are not invited to attend for breast screening until they reach 50, so this was a trial to assess the value of screening women earlier. She went for a mammogram every year. Sabiha was keen to take part because she thought it would be better to detect any breast cancer as early as possible. She believes if she had had any problems she would been recalled, but it would have been nice to be sent a letter at the end of the trial thanking her for her participation, telling her the outcome of the trial and reassuring her that there was nothing wrong. She feels that providing feedback is the least that could be done to recognise people giving up their own time to help research projects.
 
More recently, Sabiha saw a request in a newspaper for volunteers for a trial comparing a placebo with a cholesterol-lowering medication. As a diabetic, cholesterol is an issue for her, and so she volunteered. She was not worried about being randomised and perhaps getting the placebo. However, when she was screened, her blood cholesterol levels were found to be too low to be eligible for the trial so she was not able to take part. Although this was good news from the point of view of her own health, she was disappointed not to be able to contribute to the research.
 
She has been thinking about taking part in a trial for healthy volunteers for which she’d get paid, although she has been put off to some extent by the bad side effects experienced by people taking part in a trial at Northwick Park. When Sabiha has volunteered for research in the past she has had to take unpaid leave to attend appointments. Even though she has been willing to do this she thinks that more people would come forward for trials if they were paid something for their contribution. She also feels that being given lots of written information can be off-putting and that shorter summaries of the information with key points highlighted would be helpful.
 
Sabiha would like to see more done to raise awareness of clinical trials as something for the public benefit. She would also welcome research into other areas such as complementary therapies and counselling.
 
 

It never occurred to her to drop out of the breast screening trial. She likes to see things...

It never occurred to her to drop out of the breast screening trial. She likes to see things...

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Did you ever think about dropping out? Because that’s quite a long time, several years.
 
No, not really. I thought, “If I’ve taken part I might as well finish it.” Yeah, no point in going halfway and then pulling out, because the research would probably flop. So no point. I think if one is to take part in anything, they should go all the way instead of leaving it halfway, because I don’t believe in unfinished business. I think you have to go to the root cause of everything, and sometimes that might get in the way. I think that’s how I am. I like to finish the things properly, not leave you in the lurch halfway.
 

As a diabetic, she knew she was at risk from high cholesterol. She was glad to learn her...

As a diabetic, she knew she was at risk from high cholesterol. She was glad to learn her...

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I read a paper, and in it had an article if anybody wanted to take part in a trial, and I thought, “I don’t mind”, because I was told by my consultant that there was, my - as I’m diabetic, my cholesterol levels should be lower than a normal person, and that I might have to be put on a medication called statin. And so I thought it would be a good thing to find out whether it would benefit me as well as anybody else.
 
So what did it say in the, in the thing in the newspaper about what the trial was looking for?
 
Well, they just said that there was a trial for cholesterol, and if anybody was to take part, to ring in, which I did. And I was to have my bloods done, and it depended on my bloods if that’s what they were looking for, the level that they wanted for the trial. And I said, “Yes, I would be interested” and I did have my bloods done. Good for me that my blood, my cholesterol level was not that high, but it wasn’t what they were looking for. So I did not have to go any further. But I was ready to take part. But it wasn’t for what they were looking for.
 
Were you disappointed by that?
 
Well, in a way I was disappointed. Not from the point of view of my health, because that was good for me, but from their point of view, that I couldn’t be of any help.
 

Sabiha thinks long information leaflets can be off-putting. It would be good for people to have a...

Sabiha thinks long information leaflets can be off-putting. It would be good for people to have a...

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There was quite a lot to read, and I think sometimes that can be off-putting because, you know, sometimes you haven’t got the time to go through all the pages. And you put it away and you think you’ll read it, you’ll read it, to the point when sometimes it becomes quite urgent, when you’re about to go or take part. So it would be nice to have it in a like condensed way, with like the summary, which I think would be better, instead of pages and pages of information which sometimes people don’t have the time to go through.
 
Sometimes a lot of writing and a lot of paperwork can be off-putting. If it was to the point, summarised, condensed, and pinpointed the exact points that are more important would be beneficial and it wouldn’t put people off taking part in these researches. 
 

Feedback of results shows respect for people’s contribution. If they don’t feel involved they may...

Feedback of results shows respect for people’s contribution. If they don’t feel involved they may...

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It’s, it’s the feedback at the end that is really important to the person, because you’ve taken part free of charge without any benefit to you except for that your health is okay - I mean financial benefit - then one would expect a result at least at the end of it, to tell them, you know, “Thank you very much, you’ve taken part, and there’s nothing to worry about.” It’s, it’s a peace of mind that’s more important.
 
And it doesn’t take much really to --
 
No.
 
-- do that.
 
No. I mean, I was, I think I was kind enough to them to take part in this and my time and everything, but that was the least they could do to feed back. I think feedback is more important, because that looks like you’ve taken part and, you know, that’s it - they’ve had what they wanted and that’s it, bye-bye, you know. That’s not good enough, you know.
 
Despite that, would you still take part in another trial if it was offered to you?
 
I would, I would.
 
And why’s that?
 
Because it’s of benefit to a lot of people.
 
Is that your main reason for wanting to take part, rather than any benefit to you personally?
 
Well, it, that matters as well, obviously. But, okay, if it’s benefited me, it’s benefited millions of other, other people and I’m doing good to the community. So I’m helping everyone else.
 
I think feedback is very important, that the person who’s taking part knows all along what’s going on and things like that, and have communication. Because if there’s breakdown of communication, then it’s not going to help the person who’s taking part, and they’re not going to encourage other people, and they’re not going to take part in it again. Because that’s very important I think, communication and feedback, most important two things.
 

Sabiha would have used her own annual leave to cover time off work for trial appointments.

Sabiha would have used her own annual leave to cover time off work for trial appointments.

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And what did they tell you at that point? What was their explanation of what would be involved if you’d gone through with it?
 
Yes, they said that I’d have to go there, to the, to a particular hospital for a couple of hours at a time. And then it entailed a few blood tests and other tests, and some, a couple of, I think one full day and a half day, and things like that. So they did explain to me what it would involve, what, how much of my time and everything.
 
And would that have worried you, having to spend time going to appointments and so on?
 
Not really, because I was going to be taking my own leave to do all that. So because I have lots of leave, I was prepared to take my own leave and let them do the research.
 
So it would have had to be your unpaid time? Or your holiday time?
 
My holiday time, yes.
 
Which is okay if you’ve got plenty left.
 
Yes.
 
Yeah.
 
But if you haven’t, then obviously it’s something that, you know, not many people would do if they weren’t, you know, they were pushed financially, not to have the money that they usually have, because it’s not easy.
 
Did you actually ask your employers if you would have been able to do it on paid work time?
 
No, I didn’t, because I have a feeling that they would have not allowed me to, because they’d say that, “Your work will suffer. And who’s going to cover you?” and things like that. So that’s the thing. Because one’s not covered if - especially now I think it’s getting harder - that if you’re on leave or if you’re on sick leave, there’s no cover and you come back to a pile of things. So that’s, that’s the… that’s the bad side of it, I would say, yes. 
 

Appointments at evenings and weekends would make it easier for people. A token payment for their...

Appointments at evenings and weekends would make it easier for people. A token payment for their...

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And I don’t know if sometimes people can’t take part in it because of time. And if they’re committed and they’re working and they’ve got a full-time job, to take time off is not easy. And I think it would be nice if all these trials are a bit flexible, in that they try, I mean they do these kind of tests at weekends and evenings. Then there might be more people that would come forward, because during the day when people are working they’re committed and it’s difficult for them to take time off.
 
What do you think about paying people to take part in trials? Obviously with the kind of the Northwick Park* ones, that’s different.
 
Yes.
 
But in these kind of routine healthcare kind of trials, what do you feel?
 
I think more people would take part if they were paid for these trials. Sometimes it might not be possible for the trial organisation to pay them, because of funding or whatever. But I think more people would take part if they were paid for what they were taking part in, because it is, it is, I mean, their commitment. And if they’re taking part, I think if they’re not paid, it’s nice of the people to give their time. Whereas if they were paid, there would be more people that would take part in it, because at least they would get some kind of token for what they’re doing. So it’s, it’s important, really. But as I said, sometimes the funding gets in the way. And it’s, it’s not the person who’s doing the research, it’s not their fault. It’s somewhere else where the problem lies, but they might have to face the music.
 
I think also there are sometimes ethical issues about paying people, and whether then people are going to feel kind of pressured into taking part because there’s money attached to it.
 
Well, it’s not, it’s not a binding on anyone. It’s their own choice. So I think if they’re getting paid it’s not, it’s not really putting pressure on them. It’s their choice. It’s, you’re not, you’re not being forced to do something against your wishes. So it’s not, it’s not something that they’re forced to do. So it’s their choice.
 
* FOOTNOTE' The interviewer is referring to a Phase 1 trial at a commercial research unit based at Northwick Park Hospital in 2006 when 6 healthy volunteers became extremely ill. ‘First-time-in-humans’ studies are carried out precisely because we need to find out about possible risks and side effects before giving the treatment more widely. Most of the people we talked to took part in trials of treatments which had already been tested in humans before.
 
A copy of the Inquiry Report of this incident can be downloaded from the Department of Health website'
 
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