A-Z

Sergio - Interview 37

Age at interview: 63
Brief Outline: Sergio has taken part in several trials, including a placebo-controlled trial of diabetes medication, and a trial of talking therapy for depression. He likes to volunteer to support medical research.
Background: Sergio is a retired hospital porter. He is divorced. Ethnic background/nationality' White Hispanic.

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Sergio had always been very healthy until about ten years ago when his GP told him he had diabetes. This was a real shock, and at first he found it hard to accept that he had diabetes and it has made him quite depressed sometimes. Now he has learnt to live with the condition and it is well managed. He feels this is largely because of the excellent care from his GP, who had a special interest in diabetes.
 
When he was first diagnosed, Sergio said to his GP he would be willing to take part in research. He thinks it is important to support medical research and help others by taking part. The first trial he was invited to take part in was a placebo-controlled trial of medication for diabetes. The drug he was taking seemed to make no difference to how he felt or to his blood glucose level. It was less convenient going to hospital for appointments and blood tests, so he was quite glad when the trial ended and he could go back to the care of his GP. He was pleased to get a letter thanking him for taking part and letting him know that in fact he had been in the group receiving the real medicine, not the placebo.
 
Sergio was not worried at the time about which group he would be allocated to, and has always trusted that research would be carefully managed and monitored. However, since the case in 2006 when six healthy volunteers experienced severe side effects after taking a new untested drug he has become slightly more cautious about taking part. He feels it is important to restore public trust in medical research, as otherwise not enough volunteers will come forward.
 
He has also volunteered for a trial of talking therapy in the treatment of depression. This involved attending several counselling sessions, and then a follow-up study. Sergio enjoyed the counselling sessions and is interested in psychiatry. He is not sure what outcomes the researchers were looking for in the trial, but he thinks they may have been interested in whether people responded to changes in room temperature during counselling, as he remembers being asked whether he was hot or cold.
 
Sergio feels it is important for people to come forward for research, and thinks more could be done to help explain research to people, make sure they know what trials are going on and give them confidence in the research process.
 
 

Sergio has always supported the idea of medical research, so when he was first diagnosed with...

Sergio has always supported the idea of medical research, so when he was first diagnosed with...

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So tell me how - so you’ve been diagnosed with diabetes. At what stage were you asked to get involved in this trial?
 
About three or four years after I was with treatment. One of the reasons was that it’s important, your question, because I always believe in science and research in medicine. So when it was discovered, it was such a shock, that I was sure I could die any time. I was really thinking that I could die any time. I didn’t know about diabetes properly. But I said to my doctor, “Doctor, if you know about any research I will be pleased to participate.”
 
Well, anyway I said to the doctor, I offered myself to the doctor. And so when he was, suddenly from independent areas I received a letter if I wanted to participate in, in research. I did participate. And then I start to, probably I have done six or eight times research in general.
 
So the diabetes one that you took part in first.
 
Yes.
 
Was that the GP who wrote to you, or the hospital?
 
He report, he report to the hospital - not report - but he informed the doctor that he had a patient who had offered himself for research.
 
What were your main reasons for wanting to take part?
 
Support medicine and general research. Happy if it can help me personally, but happy as well to, to help, to develop medicine to general, to the general public. So it’s one thing altogether, the idea is just one. And I always thought about that. So it’s with pleasure that I can participate and give my own experience. 
 

Sergio was told at the end of the trial he had been taking the active drug, but his diabetes...

Sergio was told at the end of the trial he had been taking the active drug, but his diabetes...

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And they told you, you’d been taking the tablet, not the placebo?
 
Later on when we finished, when we finished everything.
 
Did you notice any difference?
 
Not at all, not at all, not at all.
 
Do you know what the results of the trial were? Did they--?
 
Well, they, I suppose they sent us a letter, probably the standard one, quite happy with the results of the trial. And besides thanked us or thanked me, thanked me. They told me, “By the way you have been given a, a proper tablet. You’re one of the, the lucky persons.” Anyway but I can’t say that it was better for my condition, or worse. I never had any difference in my symptoms with this new tablet.
 
Did they take regular blood tests?
 
As well, yes. That was part of the trial after – twice, every two, every month we had to go back to the hospital for a blood test. And with a special recommendation, any problem we had to get in touch with the – we were given a telephone number, which - but in my case and I suppose the rest of the other group we didn’t have, in that particular research we didn’t have any problem at all.
 
But it, presumably they thought it worked for someone if they --
 
Yes, probably. But in not my case. It was --
 
And it didn’t make any difference to your blood glucose?
 
No, no, not at all. No, no, no. No, no, no. So I consider myself, I talked to my GP and he, he said, “Well, probably it’s another tablet, but similar to the one you are taking now.” So probably he, I didn’t ask my GP which kind of tablet was it. But we were given enough information in general from the research. So we accept, because we knew the situation that may happen. We were aware and we were told about that. 
 

Sergio was not worried about whether he got the placebo or the active drug. Since the case at...

Sergio was not worried about whether he got the placebo or the active drug. Since the case at...

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Were you worried about being given the placebo and not getting the real drug?
 
Not at all, at that, at that time. Later on, one or two years ago, perhaps you know, there was an ex-, a research in London, I think it was in London, and some people, they were affected for some experimental tablet. It was a famous case.* So since then of course I, I was more comprehensive, more aware that I have to be, to be careful if I participate in other, another research. But until that moment I trust completely. I think it was a gen-, a mistake, understandable, whatever the result’s awful. But I suppose it’s part of the research in general, mistakes, everybody can make mistakes.
 
So in a way that’s made you more worried about the thought that you might get a dangerous drug rather than getting a placebo? Because sometimes people --
 
Yes.
 
-- worry the other way, that they’re not going to get something that might help them.
 
Yes. I suppose so. And, what can I say? I thought at the beginning when this problem happened with the mistaken, mistaken tablets, medicine they were giving to some people, well, they, I do remember that those people were in hospital for the trial, I think for two or three weeks, some time. But I’ve never been in hospital for a trial, just some couple of hours or whatever. Or only hospitals that’s in particular areas, not to stay for more than four hours, to say. And, and the, the only once, the time that I participated in this research with tablet, I suppose I was completely, I trust. I trust, I trust completely the research. But, as I say, with this other case later on I am, I could be more aware to make sure. But at the same time I’m sure the, the people who make, organise the trial or the research, they have to be more careful because it was a, this situation affected everyone, the people that could participate in the research and the organiser as well. Loss of trust, something like that. So, but in general I do support research, investigation, whatever.
 
And the idea of being randomised doesn’t worry you?
 
No, no, no, not at all, no.
 
*FOOTNOTE' Sergio is referring to a Phase 1 trial at a commercial research unit based at Northwick Park Hospital in 2006 when 6 healthy volunteers became extremely ill. ‘First-time-in-humans’ studies are carried out precisely because we need to find out about possible risks and side effects before giving the treatment more widely. Most of the people we talked to took part in trials of treatments which had already been tested in humans before. A copy of the Inquiry Report of this incident can be downloaded from the Department of Health website.
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