English medical records are about to be given away. As GPs, we’re fighting back
1–10 of 83 posts
Re: English medical records are about to be given away. As GPs, we’re fighting back
#2Australia had similar with https://www.myhealthrecord.gov.au/ a few years ago. At the time you had to opt out iirc. At least apparently you can opt out at any time and your records will be permanently deleted.
Re: English medical records are about to be given away. As GPs, we’re fighting back
#3They're at it again. This one seems like another care.data only possibly worse.
For those who would like to opt out, see here:
https://medconfidential.org/how-to-opt-out/
Note that if you haven't previously opted out from similar plans for data sharing, you'll probably need to opt out of two separate systems this time, one for sharing your GP records and one for sharing records from other sources like hospitals.
The deadline for notifying your GP surgery to avoid data starting to leak appears to be 23 June.
Also note that in some situations, for example if you want to opt young children or vulnerable adults you care for out of these systems as well, you may be in print-and-post territory even if you could opt yourself out using an online system.
Re: English medical records are about to be given away. As GPs, we’re fighting back
#4For 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...
Re: English medical records are about to be given away. As GPs, we’re fighting back
#5I’m guessing the primary use
of this data will be for US pharmaceutical companies to find out exactly how much the UK market is worth so they know how much they can pay lobbyists to put pressure on Uk-US trade negotiations.
Re: English medical records are about to be given away. As GPs, we’re fighting back
#6For 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…
Ah, amazing. I had lost my NHS number, and had no idea how to retrieve it. Thanks for the link!
Re: English medical records are about to be given away. As GPs, we’re fighting back
#7The fact that GPs are acting as some kind of custodians for this data isn't it also the same problem? This data should belong to their owners: the patients.
Re: English medical records are about to be given away. As GPs, we’re fighting back
#8I’m guessing the primary use of this data will be for US pharmaceutical companies to find out exactly how much the UK market is worth so they know how much they can pay lobbyists to put pressure on Uk-US trade negotiations.
That seems rather uncharitable. The primary use of the data almost certainly will be what it's claimed to be, helping various legitimate research groups to do their research and helping various legitimate organisations within or supporting the NHS to make sensible plans.
The real problem is the inherent risk that other uses will also be made of the data, legally or otherwise. Compliance with the rules for using this sort of data properly and securely has not historically been 100%, and this is Pandora's box. If anything ever seriously breaches, that's game over for the privacy of tens of millions of people, for life.
It's also being done very quickly, very quietly, potentially illegally, and on an opt-out basis, which should be reason enough for us to be extremely sceptical about the whole process even without the doctors here raising questions about the medical ethics involved from a professional perspective.
Re: English medical records are about to be given away. As GPs, we’re fighting back
#9Is this possible because of Brexit or is it just more unlawful data collection in the UK? If I (in Denmark) switch GP my new GP can't see my journals without me filling out a form to allow it and hospitals definitely can't access them no matter what as it is two independent systems.
Re: English medical records are about to be given away. As GPs, we’re fighting back
#10NHS response to this and similar allegations
Collecting GP data - advice for the public: https://digital.nhs.uk/data-and-information/data-collections...