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Table 3 Personal needs taking precedence

From: How informed is declared altruism in clinical trials? A qualitative interview study of patient decision-making about the QUEST trials (Quality of Life after Mastectomy and Breast Reconstruction)

[Own need] I don’t know, it’s just my personality thing, I’m just aware that research needs to be done, […] and I just thought ‘Oh God I ought to do it’ and then I thought ‘No, absolutely not, it’s not for me’. […] to be honest it’s the control thing because when you’re diagnosed you just feel like your life’s on hold. People are saying, ‘Can you come and do this that and the other,’ and you think, ‘Well I don’t know. I don’t know when my operation is going to be. I don’t know when the tests are going to be. I don’t even know if I’ll be able to go out at work or what.’ You’ve got no control over anything. Then to not even have any control over the process, the procedure it just seemed like yet another decision that I didn’t have really.

[On randomisation] That if I was happy to either have an implant, or not and then it would be randomly decided whether I would get one or not. […] what happens is that your name goes in a hat more or less. […] it’s just because it makes it completely fair […]

Trial decliner, full understanding of randomisation (participant 19)

[Own need] I’m the kind of the person that’s happy to try to do things. I was a blood donor for years. I’m happy to do it voluntarily but it’s not so much that when you’re given the information you are always thinking, it sounds selfish, but, ‘What will I get out of this?’ As much as, ‘What can I give to them?’ It’s nice if you can get a little bit out of it for yourself […]

[On randomisation] It’s like being in a lottery, isn’t it? […] When you’re in hospital you want to feel that you’re not being treated as a lottery number, you’re being treated as an individual. It’s important because then you feel that your best interests are at heart […] doing something randomly you haven’t got the researchers, they’re not choosing which patients to use it’s the randomisation so therefore you can be going from a wider spectrum of people instead of thinking, ‘Oh well I’m going to do this study and I’ll just pick out blonde-haired blue-eyed 30-year-olds,’ or, ‘I’ll pick her because I like the colour of her hair.’ You’ve got no input at all as to why you’re picking somebody. It’s completely random and that, to me, is for a study I can understand it, but as a patient you don’t like to feel you’re in a lottery.

Trial decliner, did not fully understand randomisation (participant 27)

[Own need and randomisation] I didn’t mind being asked, I was quite happy to go into the trial for that reason, because it’s research and it’s proving a point and hopefully all for the benefit of mankind, that didn’t worry me. Randomised I didn’t think I really understood what they meant by randomised until it was explained to me that you get whatever treatment we give you type thing, as in the different flaps that are on offer for rebuilding your boob and all that jazz. But as soon as they said implant I baulked at implant because I didn’t want an implant.

Trial decliner, understood rationale for but not process of randomisation (participant 16)