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Biobanking

Getting feedback

During research projects, participants may get two types of feedback. They may receive information about their personal health and/or wider information about the results of the whole study. Practice varies across different types of medical research, but participants should be told whether they can expect to see any results as part of the information they are given when they first decide whether to take part. Being a healthy volunteer can bring benefits to an individual aside from a sense of altruism, whilst for those whose disease is being researched, there is satisfaction in contributing to increasing knowledge of their condition. (Please also see ‘Reasons for taking part in biobanking research - personal benefit’).
 
Own health
Participants in the UK Biobank and some other projects for healthy volunteers will be given a print-out of their personal health measurements and the people we spoke to who received this found it useful and interesting. They were reassured to think that if any problems were picked up they could be referred back to their GP and this was seen as a positive benefit to taking part in the research.
 
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With a family history of high Cholesterol, Louise thought being given the results of her...

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Age at interview: 44
Sex: Male
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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.
 

Gareth was told that his cholesterol was normal. He finds research really interesting as a means...

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Age at interview: 49
Sex: Male
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So I’ve always been interested in my body weight and my body mass, and I have seen it go up and down. So, and I’m always keen on information and data. I always record when I exercise, record my weight and anything that gives me some more information to go on would be interesting.
 
So I went along, and they just did some blood samples, a body mass index and some various tests. And then they - I had hoped that they were going to do a body mass scan, which was one of the things that was suggested as being part of that study. In the end they didn’t need any extra volunteers for that one. So they did that testing, and came back to me in a nice little letter saying my HDLs and LDLs or my triglycerides, or my - I can’t think what you call it now. What’s the real name for it? [Checking information sheet] Cholesterol levels, all my cholesterol levels were fine, which was again one of my interests in that.
 
And then towards the end of last year, 2009, a second invitation came to one on the metabolism of adrenaline, which despite it being equally invasive didn’t, it appealed to me. It was possibly the sports side, you know - adrenaline and all that, that’s good for you, it’s, I can see the benefits. So I thought - and I generate plenty of it myself, so what can be the problem with that? So I volunteered to do that one and went down for some initial investigations. I signed up and went through a bit of a pre-screening, and I went down in January this year to do a pre-screening or to do some physical measurements.
 
And that was the opportunity, they actually put me on the scanner and did the, scanned an X-ray scan for body mass and body fat, which I thought was fascinating. I thought it was really interesting to see a colour map of where the fat is on my body and just, “Oh, yes, that’s where I’ve got to put a bit of exercise in at the gym at.” Things like that.
People also thought it a huge bonus that they were able to see pictures of their internal organs during the research or as part of the feedback. For example, Ian was sent pictures of his brain after a Motor Neurone Disease study and during a scan Chris was able to see her heart beating.
 

Chris thought it was amazing to be able to see her heart beating on the monitor during a scan.

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Age at interview: 57
Sex: Female
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The most recent one was for – oh, it was looking into liver function and your heart, and it’s all to do with metabolism. So it’s the [name of research centre], whatever that stands for, and it’s all, sort of the last one I did they actually put me through a scan, you know, the big scanning machine, and they actually showed me my heart beating. And that was absolutely amazing because, you know, I’m a healthy volunteer and they actually showed me the fat, and they’re looking at the fat around your heart, and outside the scanning unit they actually showed you a heart that was of a very, very large person and the amount of fat around it, and then they showed me my heart afterwards. And I have to say I’m really lucky, I’ve got hardly any fat around my heart. 
Some people felt that their test results were inaccurate, but were able to check them again with their GP. Others thought that problems with the equipment meant that they would not get accurate results.
 
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The tests during the research showed Jennifer had high blood pressure and a high body mass index...

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Age at interview: 62
Sex: Female
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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.
 

As part of one study, Tony and his partner had to wear activity monitors. He felt the monitor...

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Age at interview: 33
Sex: Male
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So just remind me what the individual feedback components were that you were given. There was body fat?
 
There was blood pressure, I think there’s a blood sugar level – oh, cholesterol level. I’m running out now [laughs].
 
And did they do a sort of like a heart, did they do some heart tests or what did they?
 
They did do, yes. Work, it was a work measurement thing. It was on, I think it was on the hand. We put a wrist thing on, I seem to remember, and it measured the amount of work you did over the 24 hour period, I think it was, yeah. And it was sort of interesting, but it was – although there were some problems about what it actually measured because if you did certain types of exercise it registered pretty well. Louise runs, whereas I did cycling, and it, because of the nature of the exercise - it’s fluid and smooth - it doesn’t register anything’s going on, hardly. But I mean [pause] - I mean, yes, so it basic measurement of how much work you did in a day, and it gave feedback about how much, about what was the essential amount to do in a given day, or what was considered not enough and what was a lot.
Although medical tests that are part of research studies can give you feedback about your health, it is important to remember that they are not full health checks and should not be substituted for visiting your GP if you have health concerns.
 

The staff at the UK Biobank told Gill that her blood pressure was high. They encouraged her to...

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Age at interview: 55
Sex: Female
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One, I mean there was some, or has been a little bit of personal gain, if you like, from this, because they do give you the print-out of your various measurements and bits and pieces. And actually my blood pressure was quite high. So I have followed that up. And, you know, it perhaps would have come to light anyway, but I found that quite useful. And it was nice to have, to know what my bone density was and my lung function and those sorts of things. It was quite interesting to get, to get that listing. So there is something you can take away from that, yeah.

 
And you get a print-out of your results, which is a limited number of things that they feed back on. But it includes your height and weight and body mass index. And it has at the side of it a list of whether that’s good, or not very good, or very good I suppose, so that you get a little bit of feedback, which is actually quite a nice thing to take away.
 
And with the blood pressure, did it say anything such as, “We would suggest you talk to your GP” or?
 
The nurse who took it said, “That is high. Your blood pressure is quite high. You should be aware of that.” And I said, “Do you think that it’s high enough for me to talk to my GP?” And she said, “Yes.” And then when I got the print-out it just said, “Very high.” However I have been going through a very stressful time of my life, with my mother moving house, so it may be that it will settle down. But at least I know, you know, I took that information and followed it up with my GP, and I am now being monitored. So that was, that was a good outcome for me to have that and, you know, it’s useful to know what, whether there are issues and problems with those areas. But they are very specific about it not being a proper health check, that you mustn’t assume that this is a, something that is the same as a full health check, and that they won’t feed this back to your GP. It’s up to you if you want to take it to your GP. So I think that comes across very clearly, that you’ve got to be aware that this is just, you know, some information to feed back, but if they find anything, they wouldn’t feed it back to you. So, you know, I, yes, that was very clear to me. So it was a really interesting thing to be involved with. It did take me half a day to do it, but that’s okay. And, yeah, I mean there’s an awful lot of information there. And I suppose in terms of how it’s used, I presume the tissue samples are most useful if they also have some personal history details attached to them. And although maybe anonymised, there are various bits of information that would be necessarily attached to that in some studies. And I would hope that -and I am confident really - that this will be respected. It’s very public. This is a big, you know, high-profile bank and I think if anything goes wrong it will hit the media [laughs]. And I, well, I’m sure it is well regulated. And I shall, you know, be very interested to see how it pans out.
Researchers should be aware that people can be sensitive about certain types of information, such as weight or body mass index. 
 

Claire felt ‘affronted’ to learn she was a bit overweight, but it was useful to know where she...

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Age at interview: 52
Sex: Female
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What kind of results did you get, because they give you a print out—
 
They do.
 
--don’t they?
 
They do. I only a few weeks beforehand had had my eyes lasered, and so I didn’t realise it would have any impact, because of course I didn’t realise in advance what it would involve, because I hadn’t read all the paperwork properly. But, so I didn’t do the eye test piece, because they can’t puff things onto your newly surgically done eyes. But they gave me my blood pressure, my venous, you know, the rate at which not just your blood pressure but the rate at which the blood goes through, your weight, your bone density.
 
So they give you some good, you know, basic health data, and they tell you whether you’re - oh yes, I remember this. They give you the size of your waist and then they say, you know, ‘obese’, ‘average’, you know, ‘not’, and I’m sure I was something which I was affronted by, something - it was like so many inches, it wasn’t saying verging on the obese, I exaggerate, but it was something like that, and I thought, “Bloody hell.” You know? Because like I know I’m a bit overweight but not, I wouldn’t have thought that much. Anyway, it just made me laugh, really.
 
So it gives you good good feedback, body mass and all that stuff they give you, and ranges that you should be within. So it’s useful.
 
Yes, not just the result, but also--
 
Not just the result, but it gives you whether or not you’re an outlier.
The results of tests conducted as part research studies can have particular significance for people who are ill, for example in helping them monitor their condition. However, there can sometimes be negative consequences too, as Jean explains in the clip below. 
 

Jean was glad to have positive feedback about her cognitive functioning. However, she worries...

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Age at interview: 56
Sex: Female
Age at diagnosis: 50
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Just sort of going back to the initial feedback, actually, thinking about the cognitive element, do they tell you the results as they go through it?
 
Well, yes, they did, but only – well, either that or they were buttering me up and saying it was okay [laughter]. Maybe they don’t like to tell me [laughter].
 
Well, there is that problem, I suppose, isn’t there?
 
I think, in fact in the information you’re given - I mean, basically all the information, and the samples and things, that are being collated are not relevant to your clinical condition per se, but if something leaps out as being, you know, a problem then they would feed back to the clinical side, and you know, sort things out. So I think yes, if they discovered that my cognitive function was, was really declining, then it wouldn’t just be a question of being recorded in a tick box. They would contact the relevant person to take treatment, you know, further forward on that.
 
I suppose cognitive function is quite a tricky one, in a way, isn’t it? Because it might be something that some people would prefer not to know about if they uncover deteriorating function?
 
Yes, I don’t - I do know that, I mean, there’s been quite a lot of research now that suggests that there’s more cognitive change in MND than was previously thought, but I do also have concerns from both sides that for the vast majority of people it’s actually quite mild. And it worries me that people can be labelled as, you know, cognitively impaired, that it then goes back to health care professionals maybe who are dealing with, I don’t know, making decisions on end of life care or whatever, that they actually take too much credence in that, and you suddenly find that, I don’t know, the social worker isn’t going to take your word for what you want to do because you’re cognitively impaired. And I think it’s very important to keep it in the right frame, because there’s one thing to have fronto temporal dementia in MND, which is very serious, and another thing to have a bit of cognitive impairment that actually still isn’t going to affect you on a day-to-day basis - not in a, not in a significant manner - that you’re still very capable of making all the big decisions that you need to make. And that does worry me because it’s something that is being broadcast quite a lot at the moment, that, you know, it’s something that’s been found in MND and are we placing almost too much stress on it?
 
Interesting, because one of the things that they say is a component of it is losing the ability to forward plan, isn’t it?
 
Yes.
 
And I can exactly see that kind of scenario where somebody might think, “Well, we’ll disregard your advance directive.”
 
Absolutely, because you’re not in a reasonable state to make it.
 
And I think you’ve got to be very careful about the degree of cognitive impairment, because otherwise I think you’ll be penalising people rather unfairly.
Wider study results
There were mixed views about wanting to know the results of any research carried out using the samples donated. Most people said it would be fascinating, although a few said they were not really interested. 
 

Gareth is more interested in getting his personal results than the overall results of the study.

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Age at interview: 49
Sex: Male
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And did they say anything to you about whether they’d let you know the results of the research, or keep you in touch with it?
 
They said I’d, they said yes. I, to be honest, my understanding of the way research like that works is that it’ll be three or four years before anything concrete comes out of it. There may be an obscure paper comes out in a year’s time. But I’m not going to be named, I’m only going to be in there as a small data point. And I don’t think I’d get anything out of, out of that. I mean, I came away with [looking off camera at information sheets] a blood screen, a sort of list of my blood, what my blood was like, and a coloured picture of my body showing where the fat was. And that was the amount of feedback I wanted from it. But they certainly said it, you know, the research would be available if I was interested. But I don’t know whether it is, and it’s probably, it’s certainly too soon to pursue it. And by the time it’s out I’m pretty sure I’ll have forgotten about it.
As Gareth points out it often takes a long time for research results to become available, even when samples are initially collected for a specific study. Research based on samples stored in biobanks may continue years into the future and we cannot predict at the outset what kinds of research will prove useful. Some people felt it was impractical or not worth spending money on sending results years later to people, even if it might be of interest. 
 

Chris is not sure that spending money on sending results to people is necessary.

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Age at interview: 57
Sex: Female
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I mean, what are your thoughts about getting feedback from research studies that you’ve taking part in?
 
I think it’s quite difficult, I would assume, because of the time span. It must take a long time for actually any results to come out of anything. I think it’s quite important to know maybe two years’ down the line that what you did was beneficial, but I don’t know how easy, because you’ve got to draw a fine line between people doing the studying and then spending money on all the admin. I mean, you know, I like giving to charities but it irritates me no end when they keep sending me stuff through the post saying, “Thank you for your Give As You Earn,” [laughter]. Keep your money. I don’t want you to spend that on that, I don’t want you to spend it on that, you know, so again, it’s getting a fine line, isn’t it, between, you know, giving feedback but don’t waste the money on it. I’m sort of sitting on the fence on that one [laughter].
 
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Shelley said that finding out the study results was not an important factor in her decision to...

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Age at interview: 37
Sex: Female
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Did they say anything about whether they would give you feedback about the results from the research?
 
No. I’m sure that information - perhaps if I ask, but I think the study was quite long. And I didn’t do it with that in mind, for finding out if that helps, because I know research can take years, it’s not just an overnight thing. No, that wasn’t something that, if they did tell me it wasn’t something I thought, “Oh I must remember. Yeah, I’d love to find out about that.”
 
Would you like to find out at some point?
 
I wouldn’t not want to. If it came up and they said, “Oh, you took part in this study, by the way here’s an email with the results”, I’d be like, “Oh that’s interesting.” But yeah, it wasn’t a deciding factor or a point that was of particular concern to me.
 
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Julie thinks it isn't always possible to find out research results nor might she understand them....

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Age at interview: 45
Sex: Female
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I don’t think researchers can always tell people the outcomes of the research, and I think certainly in medical research projects it might just be way too complicated to understand, I think. I think just knowing what you’ve done is making a difference is very often enough. Every time I’ve given blood I have no idea how that blood has been used or for whom, but I just know that my donation and everyone else’s donations are sorely needed.
 
Of course you can’t always get feedback on the results of the research, and I think lots of medical research trials the results would be way too complicated for me to understand. I just think it’s enough to know that my participation might have helped to make a difference. Every time I’ve given blood I’ve no idea where that blood donation has gone, but I just know that all of those donations are sorely needed.
For this reason some said they were happy to make an effort to look online themselves to check how research using their samples is developing. 
 

Gill is quite happy to check the UK Biobank website for news on research using the samples.

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Age at interview: 55
Sex: Female
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How important is that, do you think, knowing what the results might be?

 
I think it’s very good to engage with people. Because if you’re doing it because you think it’s going to help, yeah, it is really good to get some idea about how that’s being used, and you feel more part, perhaps, of that research effort. So yes, I think it is important.
 
And do you think their website gives a good route in to finding what’s happening with the research? Or would you like more from them, sort of personalised?
 
No, I don’t think so. I mean it’s got to be a balance in terms of what the money is being spent on, and I wouldn’t wish them to be investing large amounts of money, large amounts more money in contacting me. I’m quite happy to go on the website and check to see what’s happening, which I do occasionally. And they’ve got videos on there and all sorts. So, yes, it’s, I think it’s an interesting, very interesting to be involved in that.
 
And again that’s one where the uses are kind of uncertain.
 
Oh, absolutely, yes, yes. But again I think, you know, the purpose is very laudable. You can’t tell what’s going to be happening in the future, you don’t know what kinds of research are going to be necessary. But I think that there are good structures to, in place to regulate what’s there and each study will be going through processes of ethical approval and so forth. So I, yes, I think it will be very interesting to see what it does produce. And if I read about some great breakthrough in the future that’s had information from Biobank, well, that’ll be great. I’ll be very pleased about that.
 

If he has time and he knows who’s leading the study, Colin will look it up to find out about its...

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Age at interview: 49
Sex: Male
Age at diagnosis: 17
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Do you in general think you like to know how the research is going and what the results are, or is that not important to you?
 
It’s interesting but not important. I mean, if I’ve got time I’ll - because I know - I don’t actually know with this one - normally I know who’s leading the research and I’ll look her, look them up and see how it’s going and see what papers have been released.
 
So you can make your own –
 
Yes.
 
-- arrangements for feedback. Yeah. And do you know with this one whether they’re going to make the samples available to other research teams? Or is it just for this one project?
 
Hmm. Now you’ve got me. I can’t remember. But what I signed up to was either, it was either, it was certainly a release for this project and if they’d asked me for one for an anonymised general sample I would have said, “Yes, certainly” at the time. I mean, it’s been harvested, it’s been taken, it’s, you know, it’s fine. “Don’t send it to waste, you know. Use it for whatever you want to.”
David remembered being told that he definitely wouldn’t receive any information on the findings of research using his samples. But in some cases people did not know whether to expect results or not.
 

Tony would be interested to know the results of the study, but couldn’t remember if the...

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Age at interview: 33
Sex: Male
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Would you like to know more about what the overall research project finds over the years as it goes forward?
 
Yes, I would, actually, now you’ve mentioned it. Yeah, because you get the sense that they sell the whole thing to you on that basis and it is interesting to see what – well, I’d find it at least a little bit interesting, and it would be good to be able to track that, and I think that is something that should be done, actually. Particularly if, you know, if you’re going to be involved in it for later on, if they’re going to be coming back to you. But I mean even if that weren’t the case it would be nice to get an overall picture of what, what role, however small, that bit of research played in a general pattern of research or what impact it’s had on the world.
 
And did they say anything to you about whether they would provide that kind of feedback?
 
I don’t remember. I can’t categorically say no, [laughs] but I don’t think so. I don’t think that was covered perhaps as well as it might have, because I think that would, that would add to the attraction of actually taking part, I feel.
 
Mmmm yes.
 
I mean it plays into that altruism business, doesn’t it? I mean altruism – “I want to do some good in the world.” Well, what good am I doing if you’re not telling me what the outcomes of these things are.
Some people felt that hearing about progress with the research might be more important for people who are ill than for healthy volunteers. 
 

Chris thinks it was less important for her find out about the results because she is not ill.

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Age at interview: 57
Sex: Female
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But it’s, as I say, you get sort of like leaflets. I’ve had, I suppose the last study I did, which is the one I suppose is most recent in my mind, I came away from that really, really sort of buoyed up. Purely because I’d, these pictures of my heart -because usually it’s too technical for you, but you see a picture of your heart beating, sort of standing outside after I’d been through this scanning machine and I’m saying, “That’s my heart”, and it’s beating and it was amazing, it’s absolutely incredible. So sort of things like that, in fact they did say - I’ve forgotten all about it - they actually said to me that if I contacted the , you know, the girl that was arranging it, they’d actually send me a picture of it and I actually forgot. Yeah, I just remembered that. But generally you don’t get an awful lot of feedback, and I presume that’s, as I say, because these things most likely take two or three years.
 
Do you ever ask them when you go in for the next study, you know, whether there’s anything coming out in the research?
 
No, I haven’t, no, no.
 
I guess it might be different if you yourself had diabetes, you might feel a more urgent, pressing need to find out.
 
Yes, yes that’s right, yes. But because I am a healthy individual then there isn’t the need. Exactly that, I think, yes. You’re just pleased to think, “Well, I’m healthy”, you know. Maybe, you know, when I get to 70 or whatever, it’s quite common to get diabetes then isn’t it? It doesn’t run in the family so, no.
Like Chris above, several people had not thought before about whether they felt researchers had a duty to send out their findings to participants, but when asked they thought it sounded like a good idea. Others held stronger views that it was important, as a way of acknowledging people’s contribution and possibly encouraging them to take part another time, particularly when they had contributed samples to a specific study.
 

Jean thinks researchers are not always good at sending research results to participants. They...

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Age at interview: 56
Sex: Female
Age at diagnosis: 50
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I think researchers are quite often rather bad at feedback I’ve taken part in sort of small survey sort of studies before which are going for a sort of PhD thesis or whatever, and you’d be just interested to know, having given your time, what the results were. And even when they say, “Oh yes, we’ll let you know”, the chances are they don’t. I actually know that, you know, with the [study name] study for example, I'm pretty certain that we will get the feedback, and I don’t care really how long it takes, because I’m fully aware having sort of done research myself, of the processes involved and that, you know, just because you’ve had your last appointment for the research that a fortnight later you’ll get the results, I mean it isn’t like that at all. But I would want to know what the upshot was of the collective experience of everybody who took part, what they gleaned from that, and whether it has moved things forward or kept things as they are or, you know, it’s been - whether it’s negative or positive, it is very good to know, and it just makes you feel that your part has been of value. And I think there’s a tendency that if you have taken the time and trouble to participate in something, then it’s just a common courtesy to sort - a short little brief summary that can be sent out to the participants is enough. I do also know that because the MND Association is very good at putting out information with a big study like [study name], it would come out on their website anyway. So I’m fairly certain I will get feedback. And I also think the researchers are geared up to doing that. But I think in all studies it would be a lesson to everybody that if you are taking up people’s time, a little bit of feedback doesn’t go amiss, and then people are much more likely then to volunteer in the future. I think if you don’t do that, then there could be a thing next time, “Well, I gave up all that time and effort, you know, to take part in it and you couldn’t be bothered to tell me, why should I participate again?” And I have met people who’ve - in various walks of life - who that has happened to, and they just refused to take part in any more research. So I think from the researchers’ point of view it’s a two-way benefit.

 

Ian felt it was nice to be thanked and given feedback without needing to ask for it.

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Age at interview: 54
Sex: Male
Age at diagnosis: 51
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Do you get feedback from the team about how the research is going and how, what results they’re getting?
 
I do, yes, and very good feedback. In fact, we’ve had some very strong feedback from some of the tests that have been going on, particularly around some of the investigation in how the brain works. And I know there’s been a big breakthrough, as far as the research is going, in finding out more about how the right and the left side of the brain communicate. And that’s all come back to, you know, we’ve been told about it. I mean, silly little thing like being sent photographs of my own brain, “Would you like to see what it looks like? And, by the way, you were one of twenty-five people that came, helped us with this data, that’s now led us to be able to put an article together and put it forward. And again, by doing that it gives us more of a chance with the medical research funding us with further things going forward.” Now all that things, all those things have been explained to us, websites to have a look at and see where this research is being discussed. I don’t necessarily spend all day going through those websites and having a look at, and finding out for myself. I do occasionally out of curiosity. But just with the very knowledge that we’re being told that it’s useful, and it’s leading to better things. Last time I went for the MRI there were two extra scans that were done – “You will you be in the in the scanner a bit longer than you were last time because we want to perform two extra things.” So, you know, just having that knowledge is very good.
 
And that’s feedback that they give you unsolicited rather than you having to ask?
 
I don’t have to ask for it. And whenever they give us this feedback they even ask us if we want more information. You know, “Feel free to” - and normally after every visit I get a thank you letter, and a bit of very, very brief paragraph on what’s going to happen in the future, and “Are you happy to come back again, say, in six months time?” or whatever. So no, I’ve got no issues whatsoever with them. They’ve been great with communicating what they’re doing and how it’s going. 
For some people getting the results encourages them to take part in other studies. As Roland said, “I would carry on anyway even if such encouraging words weren’t said. But it obviously inspires one to carry on with the research”.
 
People who were told what a difference their contribution was already making were delighted to hear about the progress made.
 

Roland describes how his neurologist spoke enthusiastically about the results of the study he...

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Age at interview: 61
Sex: Male
Age at diagnosis: 50
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Do you get regular reports from them about how the research is going?
 
Yes, to some extent. Certainly the last time I turned up, which was my, well, my third attempt - my third sitting, shall we say - the neurologist was very enthusiastic with the result, well, about the results he’d received so far, and he was hopeful that in the relatively near future he would be able to publish something that would [clears throat] help in the diagnosis of MND. And I mean he was hoping that was what he was going to find, and it seems that’s what he’s achieved. But quite whether it’s the blood element, or the MRI scan, or the lumbar puncture bit of it, or perhaps a combination of all three, I don’t know - and the eye test as well - so from my point of view there’s about four different... studies that he’s - not studies - four different elements of the research that any one of which I suppose could help the [study name] research.
 

It was a bonus for Julie when the researchers told her that the study she took part in had...

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Age at interview: 45
Sex: Female
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Because I was so heavily monitored during my pregnancy anyway, going to at least, the high risk clinic at least once a month, I always had plenty of information available, but yes, I did ask a few extra questions of the research midwives. And at one point they told me that they, they thought they had already identified one better marker, an indicator of the onset of pre-eclampsia, and I found that incredibly interesting. And I felt really pleased, as well, that my very minor participation might already have helped.
 
So getting the information about the new marker for pre-eclampsia was a kind of bonus, really, not something that you’d expect to get necessarily?
 
No, I didn’t expect to get any information that soon, half-way during the pregnancy, that they thought they had already identified a better way of identifying the onset of pre-eclampsia. It didn’t help me in my pregnancy this time, and it probably won’t directly benefit pregnant women for a few years yet, but it was a bonus to think, “Wow, they’ve already discovered something.”
If people do get sent results it is important they are understandable. Some people said they had been sent information that was complicated and difficult to understand. Others who had not yet received feedback thought they might have problems understanding it. 
 

Elaine has been sent academic papers that contain the results of the studies she has taken part...

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Age at interview: 49
Sex: Female
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Feedback on the results, I suppose, is the other thing, where you said you’ve been sent some results.

 
Yeah, they have sent, you know, like when one of the studies that I did, it came to an end, you know, and obviously - because quite a lot of the doctors that are there are, you know, they’re obviously research students that are over, you know, from maybe another country or whatever, under the guidance of the professors that are there. But so they obviously do the paper at the end of the research, and they do send you a copy - but [laughs] I think I’d need a degree in it to understand it all. But, you know, I’m sure if I wanted to know more information, and I called them up they’d be quite happy to do it.
 
Yeah.
 
But it’s quite nice to see the finished paper.
 
You know, and to know that you’ve helped them to do that, you know, because that’s part of their job as well, you know, these students that are - I mean they must be qualified doctors, but, you know, they’re doing these research papers, and if they didn’t have anybody to do their research on they wouldn’t be able to do their papers.
 
Do you think they could do more to - I mean it’s nice to get the actual papers, but also maybe to provide you with some lay summary of what the findings are?
 
Yes, I suppose it would be quite nice if it was, yes, more in layman’s terms. That might be quite nice just to have something that you understood a bit more but, yeah.
 
Would you still carry on doing it even if you never heard anything about the results?
 
Yeah.
 
Okay [laughs].
 
I would [laughs].


​Last reviewed February 2016.


 
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