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Alex - Interview 45

Age at interview: 38
Brief Outline: Alex fractured his heel in 2007. He agreed to take part in a trial comparing surgery with letting the bones heal naturally. He was randomised to the group having surgery, and his heel is slowly recovering.
Background: Alex is a University Lecturer. He is married with 1 child aged 6. Ethnic background/nationality' Russian.

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Alex was out with his family, and was running and playing with his daughter. He jumped off a wall and landed awkwardly. He was in such pain he passed out for a moment. His wife drove him to accident and emergency, where an x-ray showed he had a complicated fracture of his heel bone. Soon after he was asked if he would be willing to take part in a trial looking at whether surgery to the heel is more effective than allowing the bones to heal naturally. There is currently not enough evidence to know which of these treatments is better and both are offered as standard treatment. He was shown a DVD explaining this.
 
Alex immediately agreed to participate, and says he could see no good reason why he would not take part in a trial. As a scientist himself, he recognises the importance of research and the need to have good statistical evidence of whether one treatment is better than another. He did not feel this was a very serious condition and the treatment did not sound very invasive to him. He had a slight feeling that surgery might be the better option for him, given how bad his fracture was, so it was no problem for him to be allocated to the group having surgery. He wonders if he got his CT scan more quickly than he would have done otherwise once he had agreed to take part.
 
Since the operation, he has had quite a few problems. The wound became infected after the first operation and he had to have a second operation. Since then, one of the pins holding the plate in place inside his heel has broken. At first he was in a lot of pain again and thought he might need another operation. He is still on a waiting list for another operation, but now his walking is improving and he is not sure if he needs it.
 
As part of the trial Alex has to complete regular questionnaires about his quality of life. He finds these quite difficult to answer, because they do not allow much detail in his answers. For instance, because he has a flexible job he has been able to carrying on working normally, but in other ways the accident has completely altered what he can and cannot do. Overall, he feels he was well informed about the trial itself and learnt a lot about his condition from taking part, but that outside the trial staff do not have enough time to listen and answer questions. 
 
Alex thinks it would help if there were more general education about maths and statistics for the public, so that they understand things like probability and the need to randomise people to different treatments to get an objective answer about which is best.
 

Alex understood doctors were unsure whether to recommend surgery for heel fracture or not. He had...

Alex understood doctors were unsure whether to recommend surgery for heel fracture or not. He had...

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Well, as I said, I had a slight preference. I can’t even call it that - but I had an idea that maybe, well, it hurts enough that maybe [laughs], maybe an operation would be better than no operation. But this was just, this wasn’t any rational, rational thought. This was just a feeling. So no, I mean, I understand what randomisation means and I understood that, that it could go either way and I was prepared for that, and it went the way I was sort of feeling, but I realise there was a fifty-fifty chance that it would so, yeah.
 
What do you think you would have felt if you’d been randomised to the other group?
 
Oof.
 
Would you have stayed in the trial?
 
I think so, yes, yes.
 
I didn’t see any reason why I shouldn’t do it, right? And there maybe there may well be other cases. There may well be other cases where people feel they don’t want to do it or they shouldn’t do it for all kinds of reasons. I can’t even list in my mind all the possible reasons. Maybe they just, maybe it would take much more time than it took in my case. Maybe it would be against their wishes in some sense. Maybe it would be against their religion, I don’t know, or against their convictions. So it’s everybody’s decision. It’s obviously up to them.
 
In my case it was an easy decision. There were two ways of treating my condition. I was explained that the doctors are not clear themselves about which treatment is better, in general, let alone which treatment is better for myself. So another way to put it, they probably would have to do something like random choice anyway, even if it’s not random choice, but they would have to decide somehow among two very close possibilities, among two very equally weighted possibilities. So it wasn’t going to make it any worse for me. It was probably going to do the tiny bit I did to help the doctor understand, the doctors understand this condition better, so I gladly and easily agreed to that.
 
So everybody’s situation is different. While I hope, I hope people don’t get into serious troubles, and if they do then they consider taking part in medical trials if they can. 
 

Alex wonders if he got faster access to diagnostic tests because he’d agreed to be in the trial,...

Alex wonders if he got faster access to diagnostic tests because he’d agreed to be in the trial,...

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They did a, they did the x-ray first and somebody must have looked at it. I don’t know. I think I was, I think I was told I need a CT scan but the scanner was very busy and I can expect it to happen in a week’s time. And then I think at about, in a couple of hours’ time I was seen by a consultant and his team, and the heel fracture trial team, and I gave my consent, yes, immediately. Why not?
 
And that’s, I am a scientist myself so I understand very well why it’s needed. And then miraculously the CT scan was done within a couple of hours [laughs]. So I don’t know if that’s a coincidence, but I started seeing a benefit almost immediately. Well, I sort of felt, I mean obviously it shouldn’t matter, but I somehow felt that maybe it’s just psychologically for me, but I felt I am getting somehow slightly more attention because, because I’m not only looked at by the consultant but there is a whole team of people who are actually interested in me. And, and I’m also useful for their research, and my, my kind of fracture is exactly the thing that they are studying.
 
Have you felt that throughout the trial, that you’ve had special attention, better care in some way?
 
Not better care, no. I’m sure it wouldn’t be any worse otherwise. More attention? Well, maybe - again I don’t, I didn’t have any serious medical problems before, so I don’t really know what to compare it against. And obviously this is not one of the most serious medical problems that people have, and obviously it, it doesn’t deserve more attention than it’s getting, but - well, probably, I don’t know. Probably, maybe. 
 

It did not worry him that he might be allocated to have surgery. Compared with other people around him on the ward his problems seemed minor and he was willing to help.

It did not worry him that he might be allocated to have surgery. Compared with other people around him on the ward his problems seemed minor and he was willing to help.

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And it sounded as though you had quite strong views about almost a duty to take part in research if it’s offered. I mean you said, “Why wouldn’t you?” as if it’s a kind of--
 
Yes, yes I mean this wasn’t any, it wasn’t going to change anything or it wasn’t going to make anything worse.
 
Do you feel--
 
It wasn’t going to be obstructive or invasive in any way. It was going to help a lot of people like myself, right, research* – only more important, because they’re actually helping people rather than solving obscure mathematical problems like I do. So yes, it was pretty obvious to me, yes, you can - I didn’t think about it this way, but now you’ve called it a duty, yes, maybe you could call it this way.
 
A sort of moral kind of--
 
Yes yes.
 
--level to it.
 
Yes.
 
Yeah, I’m interested that you say it wasn’t going to be invasive in any way.
 
[laughs]
 
[laughs] Hearing the account of your surgery.
 
Well, I mean to say, well, if you come to think of that this is not the - I mean compared to, this was the lightest injury that, among people on my ward, both times. I mean people had broken spines, people had multiple injuries. I mean maybe if I was in really serious trouble, you know, in really serious pain, I wouldn’t want, you know, any extra hassle. Maybe I just wouldn’t be able to think straight [laughs]. Or maybe - but that’s another reason, because, well, it’s a, it’s a chance to help medical science and people who do medical science. And it wasn’t invasive - not just the trial itself wasn’t invasive, but I mean I was lucky enough not to get into more serious trouble and I mean.
 
Yeah.
 
That was, that was the least I could do, yes? And it wasn’t going to give me any extra trouble, and the trouble wasn’t comparatively serious to start with.
 
* Footnote' In referring to helping ‘people like myself’, Alex means fellow scientific researchers rather than fellow patients – he is a maths researcher.
 

He doesn’t remember being told if he would receive the results. He asked to see a copy, but not...

He doesn’t remember being told if he would receive the results. He asked to see a copy, but not...

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There was something else I was going to ask you about, whether you’d remembered whether they said anything to you about whether you’d get the results of the trial at the end.
 
I [sighs] I don’t remember. I actually asked to be given the results of that, just because, because I was curious, yes? So.
 
Do you think it’s something--
 
So if it’s published, then I would like to have a copy of that for sure, yes.
 
Do you think it’s something that ought to happen anyway, automatically, that results should be given to participants?
 
They should have an option. Maybe not everybody would think about it. I, it was obvious to me, again because I was a scientist, and, you know, and I knew this research would be published, and that’s why I asked. I mean, for somebody who’s not familiar with research maybe there should be a tick-box which asks them if they want a copy of the actual final outcome of it.
 

Having a DVD as well as written information was really helpful. Alex did not feel much need to...

Having a DVD as well as written information was really helpful. Alex did not feel much need to...

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Do you remember what information you were given, what kind of things you were given to help you make up your mind?
 
Oh, that was actually quite helpful, because I was given a - I was already in hospital, in a hospital bed - and I was given a portable DVD player with a record of, of the head of the team, a professor, from the university who are running this trial. And, and there was quite a detailed explanation of what the structure is and how it’s treated, and what the options are so I think this was one of the most useful things that, that I actually received as information, yes. And there were leaflets and there were forms, but actually, somehow this, it helped to see this DVD, yes, definitely.
 
And did you talk to anyone else to help you make up your mind? Did you talk to your family, your wife?
 
To make up my mind about taking part in the trial? Well, my wife was around at the time. I mean there was no question. Why wouldn’t I take part in the trial? So I don’t I don’t remember if I actually discussed that, or it was obvious to both of us, but it was I think obvious, yeah. Why not? 
 

TV programmes might raise awareness, but Alex thinks improving public understanding of medicine,...

TV programmes might raise awareness, but Alex thinks improving public understanding of medicine,...

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Well, it’s [sighs] it’s probably difficult to raise - well, to raise awareness about any scientific issues in the general public. So, well, I mean there are occasionally nice programmes on television about various aspects of science. So if this brilliant doctor who is very passionate about medical trials and who can also present it in a Royal Institution Christmas lectures or anything of that kind, I mean I would gladly watch, and I’m sure the general public would gladly watch. And what else can you do for, to expose science to the public? I haven’t thought about this, so I don’t know, no. I mean.
 
Schools or things in, in school science lessons? I don’t know.
 
Well, that’s for - well. I mean, well, clinical trials obviously they are a very complicated mechanism and I’ve only seen a tiny glimpse of it from sort of my own experience. And well, it involves all of medical science, as I understand. You know, in every branch of medicine you run trials, more or less. It involves maths and statistics, right? So, well, obviously you can raise public’s awareness about all those issues first and foremost. You know, I don’t think you should concentrate on teaching clinical trials to people but, you know, I mean, I wish I was taught more at school. I was in school, at school in Russia in completely different times and a completely different country, but still as a member of general public here in the UK, I wish there was more exposure to important issues in medicine, on the whole. Social issues related to medicine, right? Scientific issues related to medicine.
 
Yeah.
 
Maths and statistics is very important and a lot of people underestimate how important it is, right? So that would do a great, a great help to medical science, if, if people were more aware of statistics and statistically based decisions, not just playing the lottery, but actually knowing what probability means, and what is their chance of winning the lottery as opposed to dying at an operation. And, you know, they, these are the issues.
 
These, this is the, this is I think the, the link that’s slightly missing from an average, even from educated people, people’s knowledge often. And after that, after people have got better exposure to medicine as a whole, to maths and statistics as a whole - there must be other aspects in clinical trials that I don’t even know about - then all these components put together will already give people slightly more understanding of clinical trials, and they will be slightly more prepared when they are in a situation when they have a medical problem and they are asked to take part, to take part in a medical trial.
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