[On altruism]
My reaction was if this is going to help other people who’ve got cancer I’m happy to do that, my primary thought. I think it depends on one’s personality and character as to would view in other people but I really like to do that so my main thing wasn’t actually of me, it was helping other people because it was such a shock when I found out I’d got it [breast cancer]. It was so shocking. I had no idea, not a smoker, not a drinker or anything. I was just so shocked and I thought, ‘Gosh if any information they can glean from me is going to help people’.
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[On randomisation]
…obviously because of them randomising it, it’s neutral, isn’t it in a way. Whereas if one makes the choice people might always go for a certain option which then makes it a bit more complicated… I presume it’s [randomisation] giving more of a balanced view of what treatments are administered so that you can get a clearer picture of what the benefits are and facts and things like that.
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Trial acceptor, full understanding of randomisation (participant 7) |
[On altruism]
I wasn’t thinking of it so much for myself [potential trial benefits] but I think any diagnosis of a major illness changes your outlook anyway and it is such a life-changing thing that anything that I felt I could do to contribute to things being better for anyone in the future I just thought it was a good opportunity to do that and it wasn’t anything that was going to jeopardise my treatment or any outcome for me in any way but at least I thought it wouldn’t.
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[On randomisation]
…the computer would choose which option and it was because that’s the fairest way to do the research so it’s not sort of weighted by any other considerations..
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Trial acceptor, full understanding of randomisation (participant 8) |
[On altruism]
For me, initially taking part in trials, it was simply that I worked in clinical trials and obviously working in it, it’s something I believe in and it was something I wanted to help with so for me that was why I wanted to be involved in some of them.
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[On randomisation]
[Researchers used randomisation] So that the conclusions that you draw at the end of it are not influenced by any preconceived ideas from the knowledge of which streams you are randomised into.
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Trial decliner, full understanding of randomisation (participant 25) |
[On altruism]
Well to be honest I didn’t mind because I thought if it helps other people that I didn’t mind and I thought I agreed to take part in another study where they were taking my blood as well and stuff.
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[On randomisation]
I was aware that the computer, this is how I was made to think it was whether it was right or wrong, that the computer would decide on my surgery. And I was kind of like ooh how… it doesn’t know me, do you know what I mean? Obviously, in retrospect, thinking about it all the relevant information would have been inputted into that computer, I know that now, but at the time it was no, it’s not a person. […] it wasn’t explained to me if I could disagree with the computer.
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Trial decliner, did not fully understand randomisation (participant 22) |