Is anyone else opting out of their data being put in the ‘NHS’ database in June? I certainly am, I suspect a sale of this data to Facebook and Google to start almost as soon as it’s been gathered (and I just don’t want them to have my psuedo-anonymoised medical records, I don’t trust them with it and I don’t trust the UK government to regulate their usage of it properly).
In terms of a less direct link, basically, not that I could find, you’d have to email your GP for a copy.
This is deliberate imo - they have made this process as cumbersome as possible - you have to email the form to your GP, or post it, there’s no online version. Alongside the tight deadline, and the non-existent attempt to inform the public about it.
It’s a different thing, and it won’t stop your GP records being put in a database on 23rd June (and once they are there you will no longer be able to opt out of them being shared).
The upcoming data round up is only for England GPs. I expect they’ll do the same to NHS Wales and NHS Scotland GPs soon though, I’d keep an eye out.
Opting out via the link is national. I don’t know about moving GPs though, I’d think it would transfer (as it’s a record that’s added to your file), but not totally sure.
For me, it’s precisely because it’s not truly anonymous.
It’s ‘pseudonymised’ but can at any point be decrypted. And rather than just sending over my blood type, height, whatever to be included in databases for tracking/linking stuff, they also attach my NHS number and DoB to double-make sure it can be linked back to me.
So - given all of that, and in particular the shady stuff with Palantir and Google etc so far, I would rather my very personal data not be there for their benefit.
Totally disagree with this data sharing, as mentioned it is not truly anonymous and isn’t used entirely for medical purposes but commercial too. Also the lack of informed consent is appalling, frankly.
I suppose I’m lucky that I haven’t had cause to use the NHS much at all so they don’t have much info about me other than when I was born and some minor ailments/broken bones over the years. Nothing exciting. As such, I won’t be going out of my way to get into the GP to opt out as they’re almost impossible to access even if you need treatment.
As with AlexF (and my original post), the companies (Facebook, Google etc) who are likely to purchase this data are also likely to have the ability to deanonmyise it, and people have already demonstrated how the data can be deanonymised.
Sure, they might not do that with it. And it might get sold to Facebook, it might not. But there’s very few concrete answers about what will and won’t happen to it, and once it is in there you have no option to have it deleted or stop it being shared.
I wouldn’t actually opt out if, in the future if Hancock sells this to Facebook with no supervision and secret contracts and stuff, at that point I could opt out. But you won’t be able to, it’d be beyond your control at that point.
I won’t be going to any great length to opt out, it is futile trying to stop your data leaking or being shared.
If you’ve ever purchased anything online or for that matter have a Experian score, it’s all available to be purchased. Even if you haven’t done either of the above, the amount of data breaches from huge companies such as airlines means it is still likely out there if you’ve never even been online.
Heck, there is tracking installed on this community, so all your actions and stuff are going straight to Google as we speak.
Not my medical records, though. I feel they are fundamentally quite different to, like, my credit score. This includes sexuality, sexual history, mental illness etc.
I have disclosed things to my GP that my friends and family don’t know. I did this on the understanding it was information that would be used for my care.
I know what you’re saying but I still wouldn’t be surprised if that stuff wasn’t already out there. The NHS don’t have a very good track record of following best practices, maintaining their IT systems or keeping them secure.
Up until now, that whole record only sat at your local GP. It’s possible someone hacked a local GP at some point, but we’d probably know about that if it happened.
I was just saying that if it’s a pain to do I probably won’t bother.