Colin

Age at interview: 49

Age at diagnosis: 17

Brief Outline:

Colin was diagnosed with Hepatitis C in his early twenties. He has taken part in several medical research projects, including currently one which involves giving blood samples to be stored for research. He has also had epilepsy since he was a teenager.

Background:

Colin is married with three children. Ethnic background' White British.

More about me...

Colin was diagnosed with epilepsy aged 17, after several years of small seizures and then one major seizure. Then when he was 22 he discovered he had Hepatitis C. His GP was first alerted that something was wrong when Colin had a small surgical procedure to remove a non-malignant lump, and it would not stop bleeding afterwards. Low blood clotting can be a sign of liver problems, so the GP referred him for liver function tests. These tests showed him to be quite badly jaundiced. 

 

At this time Hepatatis was still relatively poorly understood. Colin was at first told he had drug-induced non-A, non-B hepatitis, and it was assumed that it was an anti-convulsant drug he took for his epilepsy which had caused it. The neurology team changed his medication, which seemed to help take the pressure of his liver, but once he was referred to the liver team they pursued a different route and Hepatitis C was identified. He was included in an early trial of alpha interferon, which initially seemed to have cleared the virus, but as the sensitivity of the tests improved it was found to be still present.

 

Regular monitoring continued, and Colin went on another trial a few years later, a double-blind trial of different dosage combinations of interferon and ribavirin. He found this regime awful – his red blood cell count fell dramatically, and he felt extremely unwell, so after about three months (half-way through) he had to withdraw from the trial. He was able to continue on interferon and a lower dose of ribavirin, and it did seem to improve his condition significantly. He did not notice any depression as a side effect of ribavirin, possibly because he takes carbamazepine for epilepsy which is also used to help control mood swings in people with bipolar disorder. He is currently not taking any medication for Hepatitis C, but if his score goes back up he has agreed with his consultant he will take a course of pegylated interferon and ribavirin. He will also be a candidate for trials of any new antiviral treatments.

 

Most recently, Colin has agreed to take part in a biobanking research project. This has involved very little from his point of view, mainly giving blood samples to be stored for future research and answering some lifestyle and medical history questions. Colin’s view is that medical research in this country is subject to very strict regulation and therefore he can trust that his samples will be well looked after and his confidentiality protected. However, he feels it has been an advantage to him that he has done his own research in the past, though not in medicine, and that he knows how to find and assess academic information. Over the years he has developed a good and equal relationship with his consultants, in which he feels able to get all the information he needs. For other people, he imagines some of the leaflets and forms they are given must be very daunting. However, where research participation involves little risk to the individual he would encourage people to take part.

 

Colin discusses a study he was invited to take part in because he has Hepatitis C. He is always happy to take part and does not feel he needs a lot of detailed information.

Tell me a bit more about this particular study that you’ve been involved in, the latest one and the giving samples. What has that involved?

 

No, very - well, very little. I’m surprised I haven’t had more, more back from them. It was a, quite a detailed questionnaire at the time. As I say about eight or ten tubes of, phials of blood. She sent me a questionnaire in the post, which I duly returned. And that was about it. I sort of expected more, more from this, but no, nothing else has come out of it, this one.

 

What was the questionnaire about?

 

Yes, I thought you were going to ask me that. I’ve become quite blasé, and I’m very happy to give my time and bits of me for research, to a point of where as long as I see the correct ethical clearance on the forms and the other bits and pieces, I’ll do them and sign them and carry on, because, you know, I’ve read them and seen them before and done it before. And I have to admit I didn’t pay a huge amount of attention as to what she was aiming to do out of it.

 

Right.

 

I think she was genotyping actually. Yes, I think she was genotyping.

 

So were they looking, were, did it include sort of lifestyle and family history kind of questions?

 

I think there were some in there, yes, there were certainly. There was the usual one for the liver, of course, which is, “Do you drink?” and all of that kind of stuff, which always comes up. But that question only stands out because it’s so, such a standard question on a, on anything to do with the liver.

Colin believes the body is 'just a shell' and that stem cells from fetuses should be used in research, as long as it is well regulated. We make the best ethical judgements we can with the knowledge we have at the time.

Stem cell, I’d just have to remind myself, that’s normally from aborted fetuses, isn’t it?

 

It has been, yeah. There are other ways of harvesting cells.

 

There are other ways of harvesting it now?

 

Yes.

 

I’ve heard something about that, that you can harvest your own stem cells now, I hear.

 

Yeah, and I think they can take it from cord, umbilical cord blood.

 

Yes, yeah, I’ve, I’ve heard about that, yes. So, so no, it’s...

 

Generally speaking I’m of the belief that a body’s a shell and the - if one wants to look at it from a spiritualist point of view - the body and the spirit, although they share the same platform for a while, after the body’s died, I mean, whether that be a baby, which is very sad, or a fetus, then there is, you know, to a point, “Why waste it?” you know. The material is very hard to come by, to a point, and it’s, it has unique properties. And, you know, I’m generally an advocate for using these things. The problem is that, if we’re looking on a worldwide level, is that the, what we do in the first and second worlds are relatively well controlled -I use the term ‘relatively’ deliberately - by good, quite strong ethical committees and information governance and governing committees. And they do the best we can do, with our current knowledge -I will put that caveat in - to balance the risk, the pain or other un-, yet unknown side effects of using this. And that’s the best we can do. We can’t do any more than that.

 

We can’t try and protect against things we don’t yet know about. I mean, we may look back in twenty years and say, “That was criminal, doing that.” But there again we also look back a hundred years now and say, “How did they do those kind of things?” Like the, there’s the famous one about disease. When was it? 1800 and something or another. There were two units in Vienna for birthing children, and one was run by midwives, one was run by doctors. And the mortality rate in the one run by doctors was, I think the figures are roughly right, was about 20 per cent, 25 per cent, and the one run by midwives was down around the 1 or 2 per cent. And that went on for years, I mean that went on for five or ten years. And eventually somebody worked out what it was, that it was actually contamination on the hands. Because the doctors were doing their research they had - I mean, it sounds terrible this day and age - round in the other theatre they were doing the autopsies, trying to understand why people died, and then they would come round to the mothers’ side and help with the births. It just seems so obvious now, but they didn’t know that disease was carried by what was on your hands. Because they didn’t, they thought it was either airborne, so they closed the rooms off, or it was - you know, they did, just didn’t know the mechanism for transmission.

 

No. A bit like the cholera kind of outbreaks --

 

Yes, the cholera one, yes.

 

-- and tracing it to the well and --

 

That‘s right.

 

-- and all of that. Or was it typhoid? I can’t remember. Yes.

 

One of the two, wasn’t it? But it’s the same thing. Until you know. You go, “Well, that’s obvious.” But it’s only obvious in hindsight.

Colin always reads a lot about any research studies before he took part. He feels he is less likely to take part in risky research now than when he was younger.

That’s actually maybe quite a good moment to ask you about your reasons for taking part in research, because you’ve been in quite a lot of studies. What, what’s mainly driving it for you?

 

Well, there has to be a huge element of personal reason for doing it. But it’s, it’s not without risk. I consider myself to be fortunate in my level of education, and my access to quality literature, and the willingness to do my own reading. So generally speaking I haven’t gone into any of these studies blind. And this is reading outside of the, outside of the material that’s given to you as part of the trial. I do have a secondary side because I had a change in career five years ago now, well, there or abouts, in that I’ve gone from a relatively well-paid job to a still quite well-paid job, but now working for - I can’t think of a good way of expressing this.

 

So it’s more philanthropic, what I do now, in terms of it’s no longer monetarily driven. So I’ve always had that element to me. And I am very pleased where I can do something that is of use, because I’ve enjoyed doing research when I did my degrees and it’s, it’s, I know, I know the value of having it. Because you can’t make progression without doing the nuts and bolts behind it. So that’s probably my two - but yes, certainly early on my drive was, was to, was looking at cures. Now, I was younger then and probably more willing to take a higher risk, and I probably didn’t do as much research in the first days of interferon. But that’s the way things change as the years have gone by. I would now take - actually I’ve probably passed the cusp now of where I’d be willing to take a risk again, because I’m getting older. So, you know, it’s past the stage of where anything long term is going to have to be...

 

Yes, yes, and your children are older?

 

My children are older now, and things are, bills are paid pretty much.

Colin thinks insurance companies would be interested in the data but he is confident biobanks have good governance in place to ensure anonymity.

With giving research samples, as you have done, and we’ll talk a bit more about that one, I know some people worry that that may somehow get out into the public domain and their medical records may be linked to the samples and so on. Has that ever been a worry for you, about the way that the data are handled?

 

No, I’ve not worried about it because I do know the governance process that they go by.

 

Again I have advantage of access to the governance processes. That doesn’t mean they’re in any way infallible. I think it would be a - it would be very unlucky if there was an association made with me. Because I’m not - shall we, let’s take the example you took, which is quite a good one - I’m not a media person or somebody who’s well known, where it does become crucial and there is a, more of a reason for people to want access. In my case I’m relatively Joe Public, and if it got out, it got out. There wouldn’t be - as of yet there is no impetus for people to take the effort to do the data mining required to join it all together. That doesn’t mean I can’t see that - I think I’ll be all right in my lifetime. I can see it coming of where the insurance - I think that’s where it will be driven from - the insurance companies and similar will have a real appetite for medical history, especially as they unravel more of the DNA structure.

Colin explains that research staff usually aren't under as much pressure as other staff and have more time to interact with you.

And how have you found the interaction with the research staff, in terms of sort of the way they communicate with you and the information they give?

 

Well, I have to say I - this isn’t going to be a good view for everybody in some ways. Because the two that immediately come to mind, one of the women who was doing the lead on it, I knew her, and so she and I just used to, it used to be, “Oh, how are you? I haven’t seen you for a while. How’s your dad?” “Yes, he’s great.” It’s through her father, our fathers knew each other, and so we knew them because she was the same age as I was. So that was a curious re-meeting of people you hadn’t seen for years. So that, I obviously got looked after very well, [laughs] and I had no waiting on the appointments and so on and so forth. So, and actually the attitude that - I don’t know if it’s right for everybody, for everybody the way I would look at it. The informality without crossing professional boundaries is a real trick to pull off, and it works for me.

 

And was it just that one person that you knew?

 

Well, no, that was one in particular and, but that’s when I was of an age possibly where I would have been -and that was my second clinical trial, the ribavirin and interferon mix. The latest one, which is the one I did the biobanking for, she was, she’s either, she’d either done her, she’s either finished her F2 and doing her research - that’s right, she’d finished her training, so she’d passed F2. She was doing her research because she’d decided that general practice wasn’t what she wanted and so she’d gone, she wanted to drop more of the medicine and become more of a researcher. So she was doing this as her doctoral work. So, and she was equally. She was likely communicative because - I think - because she was doing research she wasn’t under quite so much time pressure to get so many patients through, but also she knew that I had information that was useful to her. And, yes, she was the one that took something like about ten phials off me.

If he has time and he knows who's leading the study, Colin will look it up to find out about its progress. He's not worried if the sample is used for several different studies as it is important for it not to be wasted.

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.”

Colin says most research won't make you worse and there might be a chance you could be cured. But you need to make sure you understand what you're doing.

I think my biggest message would be to say that if you are, if you are or feel unable to read around the topic and understand what it is you’re actually doing, you shouldn’t be doing it. It’s really what you should do. Now if it’s a matter of clinical research because you have an identified disease such as hepatitis C, I still say you, it would help you if you could read around it and understand it. But actually to a greatest extent it’s quite a selfish one, and if they can cure you, great. And it’s unlikely - and I do say there, obviously there is a risk - it’s unlikely to make you worse off. It might make you feel poorly, but it won’t make you long-term worse off. Although hepatitis generally speaking has, it’s, the way it seems to act appears to be a very rapid onset and then down to a fairly quiescent state. And the current gold standard for treatment is actually very, is a current, is a good gold standard for the moment and will set most people up for a good, good many years of straightforward life ahead of them.

So

 

And the kind of biobanking research, where it is more --

 

Yeah.

 

I mean that’s more like being a healthy volunteer in a way, isn’t it? Because there’s no direct personal benefit --

 

No.

 

-- to you from that.

 

No. Oh, yeah, I mean, have it, use it, do whatever they want with it [laughs]. As I say, was it five or seven years? I can never remember which it is, but no part of your body is older than seven years. So if they take a bit, it gets rebuilt.