Issues with record linkage

1. Issues with record linkage

2. Don’t know content of records “I don’t know cos I don’t know it’s just, it’s unsettling to know that on that little bar code could be like all this information about me like all my life like obviously you’ve got information about me but I’d rather tell it to you and then I know exactly what you know rather than you don’t actually know what’s on here like I don’t know I don’t think I’ve got I’m pretty sure I don’t have a criminal record but [laugh] you know and like my education records and like don’t know what’s on there. (Georgina, 19, uni student, C90s engaged)

3. Limits of anonymity “Although, you know, I can see wanting to sort of check it with name, address and date of birth, also that obviously does keep it slightly more anonymous. With sort of numbers, umm, although I’m not really sure how anonymous once it’s all sort of linked up in a big sort of mesh.” (Polly 19, uni student, 9GP visits, C90s engaged)

4. Too much data in one place I: Yeah, you’d have to trust them to keep this like divide thing going, umm. Would you trust them to do that? R: I don’t know. Not with all them. I: Not with all what? R: Not with all four of them [data sources]. I: Yeah. So is that asking to trust them too much? R: Yeah. Yeah. And I do like one thing…. Like one at a time, or just the once. (Omar, 17, studying NVQ, C90s engaged)

5. Amount of data is an advantage “They’d have a wider, um, lot of information on you to like yes, know more about like each person, and they wouldn’t know about you, but they’d know about each person, like and how the different things maybe change different parts in their life.” (Felicity,18, studying BTEC, C90s engaged)

6. Inadvertent findings “…you might not be able to just get the information you want … you might just want to know about drinking, teenagers drinking does that, if you drink as a teenager do you drink more when you’re an adult. But you might kind of get other information as well like whether they’ve don’t know taken drugs or something. So it might raise other information that isn’t in the study really. .. So you haven’t got really permission to get but you kind of… But you’ve kind of got the, the um maybe there’s a correlation in that or something but you can’t actually do anything about it so it’s kind of interesting.” (Ben, 18, going to uni, C90s engaged)

7. Perception that not useful to link data I: What, can you see any like advantages of being able to link information together in that way, is there any good things about it? R: I can’t actually think of anything why you would want to link it because it’s completely different information, so like just because you commit a crime and you’ve had a heart attack doesn’t mean anything. (Chloe, 18, going to uni, 8 GP visits, C90s engaged)

8. Linkage won’t answer everything “I think there’s …I dunno… medical records I think are okay so long as we are aware that it is being taken, um, but if it is something more based on emotion such as a criminal record might be, um, then you don’t get the full picture by looking at a report by someone else. There is a big difference between talking to someone face to face and reading something up about them. Um, and I think if you are going to do research, like the emotional one, the questionnaires they have done before, you can’t do that, have a guess like you pick up someone’s research on the computer and then take a guess at what they think. I think it is important still to have the um, human interface.” (Evan, 18, going to uni, 6 GP visits, C90s engaged)

9. Moving the goal posts R: I think that criminal and benefits ain’t got nothing to do with it I: Why’s that? R: It should just be medical and education. Cos that’s nothing to do with the way that I’ve grown up or the study that they’ve been doing on me. I: Yeah, so you think that’s kind of maybe moving the goalposts a bit? R: Yeah I: Is that, so that’s wrong? R: I wouldn’t necessarily say wrong but it’s not what they’ve been doing with me. (Liam, 18, unemployed, C90s engaged)