Various pieces have been popping up about the anonymous release of our medical records.
Whilst most of us would be happy to support anonymous research uses of our data, respectable opinion suggests that the way this is being done hasn't been sufficiently thought through or debated.
Now, whilst most of us would find it impossible to believe that the current administration wouldn't think things through, this may be an issue you'd like to investigative for yourself.
If you decide to, you can choose to opt out and stop your records being shared.
Read more at www.theguardian.com/commentisfree/2021/jun/03/gp-nhs-digital-data-p...
Thanks to Matt Cuthbert for the heads-up.
You can also tell your GP practice if you do not want your confidential patient information held in your GP medical record to be used for purposes other than your individual care. This is commonly called a type 1 opt-out. This opt-out request can only be recorded by your GP practice"
Nick, there are two distinctly different opt-outs. You have opted out of one of them. There is another.
I'm not sure why you aren't reading the thread.
If anyone has the NHS app linked to your GP, an option has appeared which gives you the choice to opt-out as it does also for organ donation. If you have this you do not need to complete any other forms. I have already done it and received confirmation. You can opt back in later if you so choose.
Please see photo of the message I get on the NHS app. It clearly gives you the option here
That looks like an opt out for National data, not GP data.
Well I’m confused because my app sends you to the guide which clearly states it’s for the new digital sharing for research and planning.it is the actual NHS app not patient access. It also gives you the opt out for organ donation. I think the best thing to clear this up is to contact my GP which I will next week.
Read above, there are two levels of opt out.
It still looks like the national data opt-out.
I believe the deadline has been extended to September, I already printed the form out so handed in our opt out forms and filled in the online opt out too.
How I understood it is the GP form is for your GP records and the online/national opt out is for clinic or hospital data.
The LBC article linked by Hugh above has a direct link to the official NHS Type 1 opt-out form, which is buried deep within the NHS digital website (and ironically also appears to be hosted by Fastly, the service which so spectacularly failed a couple of days ago; that inspires confidence in NHS IT, doesn’t it?). The form helpfully has the computer codes your GP practice will need to register your opt-out at the bottom.
This form, which has to go to your GP, says
a) It’s about “personally identifiable patient data” — so implicitly NOT anonymised.
b) By opting out, you are preventing this data being shared except for your own care (so you shouldn’t be doing yourself any harm if, say, a hospital needs to see your GP records).
c) It warns that Type 1 opt-outs may be discontinued in the future and “ turned into a National Data Opt-out” which your GP practice will then have to tell you about. This suggests that opting out of both Type 1 (this form) and the National Data (which can be done through the NHS Digital website) now would be a good idea if you’re concerned about future use of information.
d) The form specifically says “when complete, please post or send by e-mail to your GP practice”. This presupposes that your practice accepts e-mails, of course, which mine doesn’t since they shunted anything useful off to Patient Access.
I would copy the link from the LBC article here, but it’s very, very long, and hard to cut and paste on an iPad. I also found that the form (a Word doc) doesn’t download properly except on a desktop computer, but that may just be a quirk of my iPad set-up.
I hadn’t been able to get anywhere with the form on the NHS Digital website myself (you’d think they didn’t want you to find it, wouldn’t you?), so the LBC link is very useful — thanks, Hugh.
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