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Comment by Symbiote | Hacker News Reader

For anyone (like me) who is no longer resident in England, you can find your NHS number with [1], then use it (plus a UK VPN) to opt out here [2].

As I understand it, [2] covers hospital data etc, but not GP data, which is the recent data grab and the subject of the article. I have written to the GP I was last registered at to see if they still hold any data on me, and whether they were intending to share it without my consent. I attached the opt-out form [4] anyway.

[3] says on "Minimum length of retention of GP records" that "Electronic patient records (EPRs) must not be destroyed, or deleted, for the foreseeable future.", and paper ones are kept until 10 years after death.

[1] https://www.nhs.uk/nhs-services/online-services/find-nhs-num...

[2] https://your-data-matters.service.nhs.uk/

[3] https://www.bma.org.uk/advice-and-support/ethics/confidentia...

[4] https://medconfidential.org/how-to-opt-out/

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Well, that's interesting. Going to the opt-out link (your-data-matters.service.nhs.uk), gives this:

  Sorry, you cannot see this page

  This might be because:

  * you're outside of the UK and this service is only
    available in the UK

I guess people outside the UK aren't considered allowed to manage their data. :(

I made a point of emailing them about this (and suggest you do so too) - I'm not sure it is legal to prevent me from managing my data, despite living outside the UK. I understand they want to prevent foreign actors from misusing the service, but this is not it.

As if making it opt-out isn't bad enough, for some, they can't even opt-out. What a s*t show this entire process has been.

What's the betting that this data is being sold for 'research' to raise a few more pounds to combat the coming economic crash?

If you are outside the UK then you can download the PDF version of the form and email it to (enquiries@nhsdigital.nhs.uk) after completion.

(https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/...)

Yeah, I emailed them too (yesterday).

No response back, at least not so far. :(

Slightly more complicated than that.

The National Opt-out [2] does not prevent NHS digital from accumulating your records in a central database (in pseudonymous form - not anonymous). It only prevents them from sharing your record with others - for now...

The type 1 opt-out with your GP should prevent your records from even being sent to NHS Digital at all. The difficulty with this one is that it's a paper form only and has to be handed to the GP by the 23rd, there is no web service to opt out of this.

NHS Digital have also hinted that they will be trying to remove the type 1 at some point in the future.

Ah, amazing. I had lost my NHS number, and had no idea how to retrieve it. Thanks for the link!

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