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Clinical Trials

Messages to other people

Virtually everyone we talked to wanted to encourage others to consider taking part in a trial if it is offered. Some recommended it because they felt it would help other patients in future, and some because it could bring the individual more direct benefit – or a mixture of both. Amanda even suggested some trials could be fun, for example in preventive medicine. (See also ‘Reasons for taking part in clinical trials – personal benefit’ and ‘Reasons for taking part in clinical trials – helping medical science and other people’).
 

Celia’s message to others asked to take part in a trial is to look at it seriously and see if you...

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Age at interview: 67
Sex: Female
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Well, I would say look at it seriously, and see if you can possibly take part. Obviously some are a little bit more daunting than others. I feel the one I took part in, it didn’t really involve a tremendous risk, say, and perhaps others may be little bit more risky, but I would say look at it seriously and see if you’re able. And if you’re able do take part because it all, every little helps, to improve treatments.
 

Being in a trial is a personal decision, but Merilyn encourages people to consider it. Medicine...

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Age at interview: 57
Sex: Female
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A trial is a very personal thing, I think. Some people would be quite positive like me, and would think, “Yeah, it’s going to be good for me, it’s going to be good for others.” Other people might be a bit dubious whether to go into that sort of thing. But I think if you sit back and think about it, that medicine has made such a progress over the years, and it’s only because the likes of people doing clinical trials, drug trials. You’ve got to practice on somebody, you’ve got to find these results from somebody, and the only way they can do it is to do these trials, so it can only be for the good of yourself and for other people.
 

Elvan joined a trial mainly because he hoped it would benefit him but it made little difference...

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Age at interview: 84
Sex: Male
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Do you think it’s important for people to take part in research projects?
 
I would say yes. Because, because of that they get to know how not to or a way how to treat certain conditions, certain sicknesses, certain disease, yeah.
 
So even though it didn’t seem to work in your case?
 
Not wholly [laughs]. I think partially. I think it worked partially, not wholly.
 
Because that’s, that’s quite interesting, because you, you went in hoping that you would benefit.
 
Yeah, totally, uh-huh. I wished that would happen.
 
And now, looking back, actually even though you didn’t really benefit a great deal, you’re still quite happy to have done it?
 
Yes, I am, yes. Mm.
 
My experience, from my experience, I would say, well, if, if you’re asked to take a trial for whatever purpose, I would say, “Go ahead and do it, yeah.” It can only, good can only come of it, in my estimation, yeah. And that is you’re helping yourself and help other people who might come after you.
 
How important was it to you thinking about helping other people when you decided to take part? Was that part of your decision?
 
Not really. No, my decision was personal, really. But I know that what is good for me is good for the goose or the gander as well. So [laughs], so from my point of view if I, if I could , there’s somebody else who might need the same type of treatment to make them good. So it’s all right.
 

It’s difficult to advise others, but Julian recommends taking part in a trial, both because it...

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Age at interview: 61
Sex: Male
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For patients who are thinking of enrolling in trials, I’d - I don’t know, it’s so difficult to give advice to other people. I think it’s a good thing to do. I’d encourage it, and there are several reasons. So there’s an altruistic reason - by enrolling in the trial you may help other people, so that’s a very important thing. And there’s a selfish reason as well, and that is if you enrol in a trial you’ll get much closer attention from medical staff than you would otherwise get. And they’ll probably be rather good medical staff as well because they’re active in research and intelligent people who really care about what’s going on with their particular batch of patients. So for both those reasons I’d say, “Yeah, enrol in a trial if you’ve got a chance.” 
As these comments suggest, people were conscious that consenting to be in a trial is a very personal decision, and so advising others what to do is difficult. Several people wanted to reassure others that trials are safe and well-regulated, and that you can always withdraw if you have any problems or side effects that can’t be dealt with.
 

Phil encourages others to think about taking part in a trial unless they have real fears. You’ll...

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Age at interview: 58
Sex: Male
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Well, as I say, if you’re asked to or if you’re approached to be going on one of these trials, obviously think about it, you know, think what it involves. But I would be, I’d tend to encourage them to do it, you know, go in for it. You can always pull out. You don’t, you’re not stuck there for a year or two years or whatever. You can always, if things are not going right, you can always pull out.
 
But I would encourage anybody to go ahead with it, unless they’ve got any real fears about it. You know, I think you’re in good hands and, as I say, you’re being monitored, you’re being checked all the time. It’s specific to the problem you’ve got, so you’d be getting more individual, you know, more specialist treatment. And it tends to be more relaxed in going to a hospital than to your doctor’s, you know. So I’d, I’d encourage anybody to, to do it, try it. And if, if there are any problems, let them know straight away, you know. You have to, you know, if anything does go wrong, obviously you’ve got to speak up and tell them you’re not happy. But I would encourage anybody to, to go ahead. 
 

Unless you have strong feelings about which trial group you would want to be in, Jayne advises...

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Age at interview: 47
Sex: Female
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I’d say that unless you’ve got any strong feelings about a treatment you want or don’t want, I’d participate. …But there are, I think there are always occasions when the treatments are so dramatically different that some people will have an in-built priority. But I think the, the amount of work that goes into setting up a trial, unless, unless there is no clear evidence that one treatment is any better than any other, the trial won’t get ethical approval. And the conditions around registering a trial, getting ethical approval and funding and everything have so, improved so much over the last ten years, I wouldn’t have any qualms that what a clinician was doing was unethical, because I know the rigours that they have to go through to get approval and you can’t do a trial without approval, and all the protection that’s in, in-built in the systems now, when you’re running a clinical trial, that you have to give reports and, you know, show how people are doing. 
 
 

Tom encourages other patients to think about taking part in a trial if it is offered. You can...

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Age at interview: 63
Sex: Male
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What would you say to other people who may be watching this and who’ve been invited to take part in a trial and are thinking about it? What would your message be?
 
Give it serious consideration, get as much information from your consultant, oncologist, whoever’s talking to you about it, talk to your family about it also. And again, as I said earlier, I think a lot will depend on the individual’s prognosis and how you view the best possible treatment that you can get. The treatment won’t be any worse, because if, as I said earlier, if you feel as a person that’s it not doing you any good or if it’s making, your quality of life is being reduced by it, speak to the doctor, speak to your consultant. If they see also that it’s having serious effects and negative effects, they’ll pull you out of it. So you always have the option of stepping back from it. But do give it serious consideration, because you will be treated well. There is the aspect also that a lot of people say, “Well, if you’re in a clinical trial you get better treatment.” I don’t know if it’s a case of getting better treatment. I think probably there are more tests done on you to make sure that the drug is not having a negative effect, so in that way perhaps people think they’re getting better treated. But I was involved in doing, as a part of the working group with the NHS Quality Improvement Scotland, doing the standards, reviewing the standards for lung cancer, and also for the core cancer standards, and that was one of the things that I got them to put in it was that just because you take part in a clinical trial doesn’t mean that, if you don’t take part in a clinical trial doesn’t mean you’re not getting the best of medical attention. So you are. But no, I would seriously give it serious consideration for taking part in a clinical trial, yes.
Even some people (such as Polly below) who had themselves decided not to take part in a trial said they supported medical research in principle, and would encourage people to give it serious consideration. But they and others advised people to get plenty of information and to think it through carefully. Hazel added, ‘These decisions should not be hurried, and you should not be hurried into them either’. (See ‘Being asked to take part in a trial’).
 

Polly advises people to ask a lot of questions and get a second opinion if possible.

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Age at interview: 61
Sex: Female
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I think anyone being asked to take part in a trial should ask some quite penetrating questions. I mean, I think first of all they should approach it in a positive state of mind that on the whole we patients would like to help science wherever at all possible. Doctors are trying to provide better proof, better evidence, better treatments, and I think it’s the least the patient can do is to help as much as they possibly can. But in the end you have to look at the particular trial very, very carefully. And I think really you need, it’s a good idea to get a second opinion from somewhere else, if it’s on something that’s very important. I mean, if it’s something minor, obviously not. But if it’s something, you know, possibly life-threatening that you suffer from, then I think you really need to know all there is to know about the treatments that you’re being offered, or possibly denied, if you’re going to be randomly put into a group that’s going to get a, what might be a very good treatment or into a treatment that perhaps might do you some damage. You need to know what those risks are and decide whether you’ll take them or not. Of course some trials, you’re not going to be offered the treatment unless you’re on the trial. I think that’s a very, very difficult call and I think that puts a lot of pressure on, on patients who perhaps very much want the treatment, can’t get it any other way, but might be randomly assigned to a group that don’t get it.
 
And I think that’s a deep ethical dilemma. Of course if it is a very, very new treatment and the scientists genuinely don’t know if it’s going to work or not, I don’t see how else they can proceed except on that basis. So I wouldn’t rule it out and say, “That’s unethical, that’s unfair”, because I can’t quite see any other way of, of resolving it. You can’t give everybody every drug that might have some effect indefinitely. It could be dangerous as well as expensive. 
 

Anthea suggests that if people have real doubts or worries, they should not agree to take part.

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Age at interview: 58
Sex: Female
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And anybody who’s thinking of going on a trial, ask questions. If you’re uncertain in your own mind that, “No, I don’t think I want to do this” or, “This isn’t for me”, then say so, because it at the end of the day it’s your life. It’s entirely up to you. And if you don’t think it’s right and if it’s not right for the family, then don’t do it. If it’s going to make you unhappy, don’t do it. If it’s going to really worry you that, “This is a trial and I don’t know the results”, then I would say, don’t do it. 
 

Lester advises people to get lots of information. Now he knows more about trials he’d be more...

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Age at interview: 59
Sex: Male
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I think if people were, had been invited to partake in a trial and were just thinking, “Well, is it right for me?” I would say, “Just ask as many questions as you can. Ask the clinician, whoever’s sitting in front of you just to talk through what the real chances are, the real options are. Have a look at all the patient information leaflets that come with it. And maybe speak to other people who are on the trial” - although I suppose that might be difficult because of confidentiality. I suppose I can only speak for myself now. But if I had something wrong with me, I would be far more likely to enter a trial now than I would six years ago when I didn’t know about it. But I can’t expect everybody else to go on a six-year learning circle. So all I could say would be, “Find out as much about it as possible. Read everything. And then just take time and think, ‘Is it right for you?’”
 
In terms of the professionals, my advice to them would be, “As far as always possible just put yourself in the other person’s shoes.” I still, I’m a great fan of hierarchy. I look up to people. That’s my age and that’s the way I was brought up. So quite honestly if a clinician said to me, “Lester, I think this is worth trying”, I would. Now, I’d have to make sure I wasn’t doing that just to please him. But I think I’d ask questions. But I think I’m more likely than not to go in a trial. If it was a screening trial, a big data collection trial, I would say absolutely, go into it. And you’d almost have to have strong reasons, very strong, good reasons not to. Because if it’s not hurting you, but it’s helping others collect information, I don’t work on the principle that they’ll then misuse it, I don’t worry if somebody loses my CD-ROM with the data on, I really don’t mind at all. You know, that’s life. We all make mistakes, we all have errors. Just get on with it, really. So I would think in terms of screening, in terms of big sort of social service type trials, just do it, absolutely. And yeah, my advice to professionals would be, “Just put yourself in the other person’s shoes.”
 
Lester took the view that you’d have to have “very strong, good reasons” not to go into a trial if it did not involve much inconvenience for you personally and might help others. But he recognised that this will depend on the type of condition you have and what your feelings are about the different treatments included in the trial.
 
Several people advised others to think particularly about the implications for family life, especially if you have dependent children or if your partner is likely to end up having to provide extra support and care.
 

Wendy advises people to get plenty of information and think through the implication for their...

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Age at interview: 51
Sex: Female
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If it’s a trial that lasts the same length of trial that mine did, for twelve months, it’s up to the individual, at the end of the day, it’s their choice totally. But you have to take into consideration the support you’d have from your immediate family, neighbours or friends, your age and your health, before you go into the trial. Because obviously if I hadn’t have been well within myself before, that would have very much made, had an impact on my decision. So - and obviously your family. Have you got small children? You know, how’s that going to impact on them? Do you think they’ll cope without Mum around theoretically for the next however many months? But at the end of the day it’s got to be down to their choice. But find out all the information you can, ask as many questions as you can, and do, make the decision that’s right for you.
On the other hand, some people felt it was important to make up your own mind and not to take other people’s views into account too much. Rose said, “You can discuss it, but the final decision has got to be yours and you’ve got to make sure that they know that.” Hazel had a similar view.
 

Think carefully before taking part in a trial, and try not to be too influenced by family. They...

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Age at interview: 74
Sex: Female
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I’d advise them to approach it slowly, carefully, taking account of as much advice as they wanted or could get. I would warn them that it can be very difficult to cope with your nearest and dearest, because they want the best for you, but they don’t know what you want. And it, they can very heavily influence you in a direction that you might have actually preferred not to go in. But you can’t discount it, you see. This is one of the factors, I think. You asked - the previous question, you can’t actually say until the moment arrives. So I would warn them that they would have to be, try and be detached from the seriousness of what it was they were trying to decide, be very objective about it, which of course is impossible because it’s an utterly subjective thing, and it’s where the subjective and the objective collide that the problem lies.  
A few people advised others to think not only about the implications (positive and negative) for them as individuals but also the wider value and contribution of the research.
 
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Caroline might take part another time, but not in the case of serious illness. She advises others...

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Age at interview: 42
Sex: Female
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What would your message to other people be?
 
I would probably suggest that they thought about their own situation and whether they had the mental headspace for it. And, and think about what they themselves would get out of it, and possibly think carefully about what, what that trial might actually, might or might not show. I think the days when you can just rely on people, no disrespect, but rely on researchers to be doing good work and doing the right thing, like you can rely on - you probably can’t rely on healthcare workers to do the right thing always. I think those days are, are kind of gone. So I think you, it pays to actually have a sense, more of a sense of what’s actually going on. Otherwise it’s a waste of your time and it can actually be counterproductive.
 
And if you personally were offered another trial, would you be interested?
 
I would, but I would look into it a bit more, I think. I think I probably wouldn’t if it was in a acute situation. I mean, I’m not having any more children, so it wouldn’t be on the ward having just given birth again. But if I was in A & E, for example, or, you know, one of my kids was ill, I probably would say, “No thanks. I’m, you know, actually I’m, I’m in my life at the moment and I haven’t really got the wherewithal to deal with all this, to evaluate whether this is worth getting involved with or not.” 
 

It is vital that trials are well designed and build on existing knowledge, and that they focus on...

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Age at interview: 74
Sex: Female
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We just have to advance by comparing in a very rigorous way how we go forward with treating patients, otherwise we’re going to be stuck in not knowing. So yes, I thought trials were a wonderful idea, but it did occur to me that if I’d been on the trial working party, I would have some things to say about the information sheet. I would have had things to say about the end points. I would have had things to say about the possible outcomes, and about the feasibility of this trial. Because a huge amount of money was spent on it. It was a very costly trial, because of all the contention, I suppose. So there are economic aspects that need taking account of. Yes, I’m totally for clinical trials but they must be good quality clinical trials.
 
And, as I found with the people that I have spoken with and worked with, and indeed the clinicians more locally, I think it can only come about by a partnership between patients and health professionals, because we each have something different to give to, to devising any project, concept, trial that needs to be done. And the prior-, prioritisation of topics as well. You know, what is important to patients? What do they, what would really make a difference to their care? What do they want to know? Because they’re at the sharp end. They know what they want to know. They know what research would benefit.
 
And I think those patients that have become involved in this are able to stand back. They don’t do it - they do it based on their own experience because they know what it feels like - but they do it in a sort of detached manner. They have to become professional in their own way, in order to realise that this is an activity that’s undertaken on behalf of future patients. You do it on the basis of what you’ve learned today, what you’re learning today, but you’ve got to go forward and I think to do it in partnership is really the only way to do it. So yes, I’m totally for it. But the trial has to be well designed, well balanced, and presented in such way as to make sense to those who are going to participate. Otherwise it’s pretty futile if they don’t understand what’s happening.
 
What do you think are the characteristics of a good, well-designed trial?
 
Hmm. It’s easier to describe a bad one, isn’t it? And this is why I got involved, because I was invited to participate in one that was not balanced. The first thing that springs to mind is of course that it should be, let’s call it a legitimate comparison. It has to be utterly legitimate. In other words it has to be a comparison with, that is based on first of all the best standard treatment, a thorough overview of what is known on that topic - you can’t just have a bright idea and plunge in and ask for money. You have got to do your homework and find out what is known about this particular topic, before you even go, go there. I think I suppose the next requirement is to sort out, prioritise the question itself. In other words, how are you going to frame the question? It has to, I think, accommodate what are the important things about the thing you’re researching.
 
So framing the question that means something to both the clinician - in other words the sort of scientific, clinical treatment aspects - together with the aspects that the patient wants to find out. It’s, I think, no good having a trial that’s got an outcome that is meaningless. How are you going to get people to participate if they can’t identify with the purpose of the whole comparison? So it has to be a fair comparison.
Joanna and Gill, for example, stressed that trials are not going to solve someone’s health problems instantly, and so one should focus more on the contribution the trial may make to the wider community.
 

Joanna suggests getting opinions from other people before consenting to a trial, and considering...

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Age at interview: 63
Sex: Female
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Well, for people taking part in trials, I think you do need to find someone who has the time to explain to you what it’s about. And you need to think about whether or not it’s going to, broadly speaking, be more valuable to the bigger, wider world than it is to you, or whether you’re doing it to help yourself, because the level of impact of side effects and, you know, what it actually does for you makes a bit of a difference. But I think in that you do have to find someone who’s willing to talk to you. And probably take it away from the arena if you have time, the actual research arena. And I don’t know whether a GP is any help, but I’d like to think that a GP could be revved up to take the sort of practical interest. I have to say my own, who is a wonderful guy, he backs off when it’s a question of talking about research.
 
And I don’t know who else you can go to, other than possibly people like yourselves at DIPEx* [healthtalk.org], and say, “Well, are there other consumers out there who I could talk to?” Because it would be quite nice to feel that you could get access to people with a bit of experience who can help you understand it. I mean, there are quite a lot of groups that you can track through the website and so on. I’ve not used them, so I don’t actually know whether or not they’d be helpful. But I certainly think that if you have time, talking about what it means and why it might be valuable is probably helpful, set in the context of how it’s going to impact on your life. I think it’s different if you’re ill than if you’re a carer. It really just is. And it’s obviously different if you’re ill and you’re hoping for a saviour to come along, because I think mostly I doubt whether trials actually do that for you. There are not very many which save your life. But that doesn’t necessarily mean they’re all awful or that they are bad things to be involved in.
 
*DIPEx is the name of the charity which runs this website. 
 

Gill thinks people should not go into a trial expecting it will solve their immediate problems....

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Age at interview: 54
Sex: Female
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Well, I mean I think it’s a bonus if you benefit yourself, but I think realistically most research is about future. And it may be future a year ahead or it may be, you know, much longer term. You may be only contributing to one small element of what’s sort of actually a much bigger picture. But I think that you shouldn’t go into research necessarily thinking, ‘I’m going to get some great benefits out of this.’ I mean, there may be other, there may be benefits. There may be things like extra monitoring, or more appointments, or you might, you might get some sort of better feel about treatment because of those aspects. But I don’t think I would go in thinking, ‘If I go into this research it’s going to cure my menopause symptoms’ [laughs]. Because that’s probably not, not going to happen overnight, but hey, you never know [laughs]. 
A few people wanted to give people a more cautious message. Marie, who had decided not to take part in a trial and felt quite angry about the information she had been given, explained, “I’m not saying that people shouldn’t go on trials but I think you’ve got to fully understand what they’re telling you.”
 

It’s vital to understand all the trial information, but that’s difficult for ordinary people....

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Age at interview: 69
Sex: Female
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I’m not saying that people shouldn’t go on trials but I think you’ve got to fully understand what they’re telling you, and for the general public that’s very difficult because we don’t understand medical terms. I was lucky because I had medical people behind me that could help me and I’m not stupid. And because it was just funny that the points that I made about this clinical trial were brought up by medical people as well, and they all seemed to have the same impression that you go into the trial, you go on, you give the approval and you do it.
 
But I think people have really got to understand the implications of doing it and I don’t think there is enough care given that they do understand, because we’re not medical.
 
What would you say to anyone else thinking whether to take part in a trial, not necessarily this one?
 
I’d tell them not to agree. Get all the information from them that you can. If you don’t understand it find somebody that can help you. It’s got to be somebody medically because without medical experience you can never understand it. It depends on your situation. As I say, if you’ve got six months to live and there is no hope for you and the trial is a chance, I think you have to take it. But if there’s hope with other things I think I would sooner put my faith in the drugs that are already available. But that is personal, this is me. I can’t read how other people feel but I do know that when anyone ever offered a drug and they’re seriously ill, their only hope that they’ve got, or what’s in their back of their mind is, that this trial is going to get me well. And that’s in everybody’s mind, not just me, that’s not personal. And I feel that you have to consider it at your own merits but you cannot go into that trial unless you have sat down with a friend or family who’s probably, or preferably, with medical experience, and he goes through with it with a fine tooth comb. And then you have to consider it. But I still think you’ve got to be very careful. 
Leslie was also angry about his experiences, and advised people to treat the information they were given ‘with great caution and considerable scepticism’.
 
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Leslie advises volunteers to check why the research is being done and what has already been found...

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Age at interview: 75
Sex: Male
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Before agreeing to go on a trial the volunteer should consider the following. Look carefully for the reasons for the trial (the protocol) to ensure that the research is meaningful and legal. The protocol, to which a volunteer has a legal right, will have been agreed (or rubber-stamped!) by an ethics committee. It is vital to know the full history of the drug, has it been trialled previously and, most importantly, check on the possible side effects. Do not assume that these will not affect you. I did — and almost died. Like me, you may be that 1 in 10,000. Check that your supervisor is actually competent. If you suffer any ill effects whilst on the trial you must be withdrawn — do it yourself, if needs be. It is vitally important that you have other contacts beside your immediate supervisor and that you have something that identifies you as being on a trial.

 

You should be given a patient information sheet and this will be your legal contract with the sponsor of the trial. Treat this with great caution and considerable scepticism. Always remember that pharmaceutical companies have their own view on what is legal and what not. The patient information sheet should be written in clear, understandable and unambiguous language. Compensation terms must be clearly stated and legally binding. You will probably be told that the company will pay compensation in accordance with ABPI compensation guidelines. They are not obliged to do so as the guidelines are not mandatory and the government via the Department of Health has no intention of making them legally binding.

David wanted to discourage people from taking part in trials just for money. (Paying people compensation to take part normally only happens in early-stage trials involving healthy volunteers). However, “doing some good to the human race” and helping other people with the same condition as you was a good reason to take part.
 
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David advises people to think carefully about taking part in trials only for money. It's...

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Age at interview: 56
Sex: Male
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I think clearly the ones that people do just for money, they target students, don’t they, and travellers, people who are travelling from Australia. I’ve noticed in a couple of the Australian periodicals that there’s tons and tons of ads in the back of those for clinical trials. And that is clearly for money. People do that for money. But if, in the case of the trial that I was involved in there was an altruistic element, and I suppose that if they’re sold on the basis that you’re doing some good to the human race, then that’s an incentive, because I think we’re all a bit altruistic, somewhere.
 
If people were tempted to do it just for the money, I’d say, “Do you really need the money? Or is there another source for the money?” Because I don’t have a good feeling about those kind of trials. And, as Northwick Park* has proved, they can be dangerous. But if you have an interest in a particular condition that you have, and I mean if it’s new treatments for life-threatening diseases, for example, and especially if you have been diagnosed with one of those diseases, I think yeah, it’s worth a go, you know. There’s a long way to go in terms of finding cures for a lot of diseases so if we can contribute, then that’s a good contribution.
 
Are you glad you took part, thinking back?
 
Yes, I am, yeah.
 
*FOOTNOTE'David 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.
 

(See also ‘Time commitment, money and other practical issues’).

Last reviewed September 2018

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