In a medical study, all patient records are kept confidential. Only a limited number of people have access. Details that could identify patients are not used in any study reports
It was all sort of erm, randomised, and it wouldn’t, nothing would be, nothing would be associated with me personally. It would all be sort of like… erm, patient A, B or C, you know. I wouldn’t be defined as in my name or anything like that.
Jenny's study was randomised and codes were used instead of her name, so she could not be identified at any stage.
And she told me [um] that there would be different, just be different questions, different facts, you would have, be given more information, and that [um] - to help you make your decision. And that she said that I would be interviewed… by people, and she told me that if I wanted to pull out at any time, I could. If I, you know, wanted it to stop, I could.
And obviously everything would be treated confidentially. And then she asked me to [um], as I wanting to go forward with it, you know, to take this piece of paper away, read all about it and then sign it, and, you know, send it back in, which I did. I mean, well, I actually just signed it there. I mean, I read through it there, and then signed it, so again, so...
I: Ok. So tell me, having, having done the interview, what was the interview about?
R: [um] The interview was – well, the lady came, she showed me what they would do on the computer, [um] she explained all the confidentiality, [coughs] going through all the things and about how… the study worked, what they aimed to do at the end of it, and then, [um] [coughs] excuse me, they interviewed you. [Um] Well, it wasn’t so much that it was an interview. It was more, “This is how the information works, this is how you use it and I’m going to show you it. I’m going to show you how to use it.” But then she didn’t interview me in that way, because she showed me how the information worked, and it was up to me to make my decision. So she went through all the things… that I needed to know for me then to make the decision.
Sue talks about how confidentiality was maintained during her study.