Heather - Interview 15

Age at interview: 18

Brief Outline: Heather took part in a clinical trial as a healthy control. The trial compared the results of tests among healthy children and children with attention deficit and hyperactive disorder. The trial was over one day and involved taking part in lots of different tests. Heather enjoyed the experience.

Background: Heather, aged 18, is White British, has one brother and lives with her parents. She enjoys rock climbing, playing the piano and reading. Heather's mum volunteered for her to take part in a clinical trial at their local hospital. Heather took part in the trial as a healthy control.

More about me...

Heather, aged 18 has just finished her A levels and is hoping to follow a career in teaching. She lives with her parents and her brother. Heather’s mother volunteered for her and her brother to take part in a clinical trial to compare development of healthy children and children with attention deficit and hyperactive disorder (ADHD). Heather remembers that the trial was to find something within the brain, a certain chemical that creates ADHD, and they were using people who didn’t have ADHD as controls.

Heather says that even though her mum volunteered her, she was really “Up for it, because it was something new”. As part of the trial Heather took part in a number of tests; computer concentration tests, bone density scans, fat percentage scans, oxygen consumption tests, ultrasounds and food monitoring. The only test that Heather didn’t enjoy as much was the oxygen consumption test that involved being in a cubicle and keeping very still which Heather says was quite hard. However, overall Heather really enjoyed taking part and would certainly do something similar again.

In terms of payment for taking part in clinical trials, Heather felt there should be no payment as an incentive. Heather says it would be nice to get the results of the trial when it has completed' but that having results that were too detailed may confuse people.

Heather also thought it would be nice to know something about the background of the people running the trials, particularly for her age group as they were thinking about their future careers. She also felt that having a specialised website or company that you could look at for opportunities to be part of a clinical trial would be good. Heather would certainly encourage her peers to consider taking part in similar clinical trials.

 

Heather was really up for taking part in the research. As well as helping researchers she thought...

I think mum was part of, mum had seen it I think she was on the website, I don’t know the details really, but it’s two women who are running it, and I can remember the name of one.

 

But, so they invited us down for the day so that was how it was done I think, it was all arranged appointment wise yes.

 

And did your m have all the information, did you see any information on it or did your mum have all that?

 

I think she had most of the information but I think the information was literally just telling us you’ll be taken for a few tests, it was when we got there that they explained everything to us so I sort of got it from there.

 

So you didn’t actually, you didn’t see it yourself?

 

No.

 

So your m kind of investigated most of that; how did you feel about that?

 

I was really up for it, I was really because I thought, what she had told us about it like oh you’ll be taken for tests at [hospital name] it was really kind of “Oh really, okay” because it was something new and none of my friends had done anything and I was like “Oh yes”.

 

Yes. So you didn’t mind that?

 

No not at all because, also we knew it was for ADHD and things like that so it was sort of like really interesting to be part of that [because] I want to be a teacher so I, even from a very young age, so I sort of thought “Yes that would be quite good for me because they might tell me a bit about it and then if they find out how you manage it in classrooms that would be really good” so.

 

Oh that was good.

 

So that was my thought process.

 

So do you think that’s, apart from your mum volunteering you would you be happy for that, those where the motivations in taking part?

 

Yes, yes and sort of really just taking part.

 

You were thinking already about your future career?

 

Yes, yes because I thought I’d like to be a part of something that might find a way to help ADHD sufferers or something like that.

 

There were lots of different tests and one or two felt a bit ‘weird', but Heather said it was...

So I remember when we first went there were all these different tests, one of the tests we had to do was picking up things on a computer screen, you know like clicking when certain things appear and when, clicking when they don’t and if you have, you know, for concentration and things and you got rewarded at the end of each test, so like you got stickers or something like that and we were a little bit younger then so it was like “Oh a sticker”. But so that was that one and then there was another test our bone density was scanned so we had to lie on a scanner and like take everything metal off, just sort of kept remembering things that you had that were metal, “Oh my necklace, my necklace” but they were fine we just had to take it off. And they scanned us, we got a picture of our skeleton and it told us all things like density of our bones, the percentage of fat we had in our bodies. Christopher had less than me, damn. So there was things like that. And then there was another one where we had to go into, I didn’t really understand this one but we had to go into a sort of cubicle thing, it was quite weird, but we just had to sit still and what it did it was sucked, I think it sucked out the vole of air or something, obviously oxygen was inside but we couldn’t move and we had to sort of hold our breath and things like that and, I don’t know what that was measuring, I can’t really remember but that was really weird and I really can’t remember what they were doing with it but it was like you’d got this little window so but so there was that one as well. We had to be in our swimming costume because even clothes would alter the readings so that was that and of course we’ve been called back to be in a new one to do so, with our brains or something so.

 

So that’s going to come up?

 

Yes.

 

Soon?

 

It’s going to come up soon. From the letter they’re going to put the electrodes on our heads, so like we have to wash our hair the morning before and we can’t use gel or shampoo, well shampoo but we can’t use like, you know, heat protection and things like that because it will alter the readings again so we’ll have to see how that goes.

 

Yes I just remembered another one actually, they took an ultrasound of our wrists I think it was, and so it was like the gel and things and I always considered ultrasound oh pregnant women you know sort of like “Oh okay that’s new” so, but there was a sense of excitement as well a bit like “Oh that looks really weird” but I was still looking forward to it. The only thing is me and my brother, we were separated so my dad went with my brother and I was with my m so that was a bit like, it was like a race actually they sort of to do it. It must have been more than two years actually because I wouldn’t have been 16 it must have been more so they sort of made us race against each other to see how quickly they could do the tests so they handled it really well.

 

Oh right, made it a bit of a competition?

 

Yes, yes.

 

Who won?

 

I think he did.

 

Yes.

 

Because I had to keep on removing metal.

 

Although one of the tests was a bit boring it was all fun to do and the researchers explained...

And where they all done on the same day?

 

Yes, I think it took about five hours to do, oh know I think there was five actually because one of the ones, I’ve just remembered when we went home we had to I think it was a saliva sample we had to do or something like that or take our weight. But we had to monitor what we ate for the rest of the day; we had to do something three hours afterwards or something like that. So you had to write down everything you’d eaten like during the day so it was quite, quite intensive in that sort of, because you were like “Can we have an ice cream, oh we’ve got to write it down” you know.

 

Yes, so it was all over, that was all in one day?

 

All in one day.

 

And the monitoring of your diet, all in one day?

 

All in one day.

 

What happened, did you send it back the following day?

 

Yes yes I think yes.

 

So just tell me again what it was like going through each of the tests, you know, how each one felt when you went through and what was the experience like for you?

 

I, the only one I didn’t actually enjoy that much was the one in like the cubicle thing it was like a bit weird. Because it was so small and I don’t have a fear of enclosed spaces but it was a bit, because then you had to sit still and you couldn’t move and that was, that was difficult because it was like 30 seconds of not moving even blinking they said would affect it, so it was, that was quite hard to sit still and then to see your m laughing at you on the other side and you want to laugh and just like no. But I, I enjoyed most of it, I really enjoyed most of it they would explain it to us and then we’d do it. They did get boring sometimes like the clicking one, it was a bit like okay come on how many more times do I have to do this because you had to do it on different backdrops like colour effects and things but I did enjoy them.

 

Did it take, did each one take very long or?

 

They did yes they actually did I think looking back, but it didn’t feel long if you were enjoying it. It’s like the one where they took the skeleton bone density and stuff, that one was alright because the person doing it was quite funny and things and you didn’t really notice but the one where you’re clicking was quite boring because you had to sit in silence, in a room by yourself, you know, it was a bit oh.

 

What was the bone density one?

 

I think it was just monitoring they basically took a scan of us with I think very little clothes on because clothes would, even though it was an x-ray but I think what, the whole point of it they took bone density, fat percentage things like that, that if there was a girl or boy who had sort of similar bone density to us, because we were control, it would be used to effect if that person had it or not, it was something like that because we were the control so a similar person to us, have we got the same development because that’s, we had to fill in like, for me like had I started periods yet and things like that and beauty and stuff like that so it was all us as the control, to a similar person, are they going through the same stages or is it all genetic and stuff like that.

 

Payment shouldn't be an incentive for taking part in research, but Heather can see that it might be necessary for some types of trials.

Do you think that’s important do you think to receive a reward for taking part?

 

I think it’s probably for some people a definite incentive. But I, I didn’t know about it and I was still up for the research so but I think in certain cases like maybe different clinical trials then yes it should be like drug testing but then you sort of think the higher the reward the more riskier the test, you know. Because I know from like my A Level research we, I covered the Northwick Park* drug trials and so the incentive that was over £1000 for those guys to do it, it was a bit, it’s going to be risky if it’s going to be that much.

 

Yes high payment for high risk.

 

Yes, risk.

 

Yes, I’m thinking in terms of, you know, encouraging younger people perhaps to take part or whether that would be, because of like two arguments,Is that the incentive only for high risk or should there just be a minimum payment or a voucher?

 

I think maybe a surprise reward would be quite or but I personally don’t think it should be any incentive because you either want to do it or you don’t and you shouldn’t want to do it because you want to get something but I don’t know.

 

Yes that’s a good point.

 

I know that definitely with some of my friends if there’s nothing in it for them they won’t do it and so that, I don’t know because I suppose my whole thought process was also in the future I might reap the rewards of doing this so maybe as well I sort of “Oh yes I’ll get rewarded then” you know, but I think also it depends on the age, maybe my age group not so much but definitely like for younger children who you need the parents consent to do it, you know, maybe a reward for that, you know, like an eating out voucher or something like that to get the parents in because then you’re needing your advertising to two groups aren’t you.

 

*FOOTNOTE: Northwick Park is referring to a Phase 1 trial at a commercial research unit based at Northwick Park Hospital in 2006 when several healthy volunteers became extremely ill. Early phase studies are carried out precisely because we need to find out about possible risks and side effects before giving the treatment more widely.