Patient records to be made available to the private sector and other researchers

[TrenterPercenter]

From 1 July 2021, and every day thereafter, the Government has Directed NHS Digital to take from your and your family's GP records:

"data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about physical, mental and sexual health" (more details)
"data on sex, ethnicity and sexual orientation"
"data about staff who have treated patients"

So the deadline is to opt out before then.

Right; you can still opt out from then.  This means that your old data might have possibly been extracted from your GP surgery after this date.  It is not a deadline.

[The Ombudsman]

Right; you can still opt out from then.  This means that your old data might have possibly been extracted from your GP surgery after this date.  It is not a deadline.

If I don't want any of my data to be extracted, the deadline for me to affect this change is the end of the month.

In this sense I'd very much say it is a deadline.

[Zetetic]

Yeah, that's a deadline and quite an important one if this exercises you.

I can see the NHS may need specialist services some of the time but might be expensive to have in house staff. Also consider they may not get the candidates applying either.

I think if you're not prepared to work for £30k and the knowledge that you're in the final bastion of virtue in Britain, serving the people of this country[nb]Or whatever you live in.[/nb], then you're not someone that we should be allowing near this sort of data in the first place, regardless of whatever ideas Lord Goldacre has put into your head.

[TrenterPercenter]

If I don't want any of my data to be extracted, the deadline for me to affect this change is the end of the month.

In this sense I'd very much say it is a deadline.

If you view it like that sure.  You also have the power to do something about it.

[The Ombudsman]

Yeah, that's a deadline and quite an important one if this exercises you.

I think if you're not prepared to work for £30k and the knowledge that you're in the final bastion of virtue in Britain, serving the people of this country, then you're not someone that we should be allowing near this sort of data in the first place, regardless of whatever ideas Lord Goldacre has put into your head.

The NHS would pay more for this band, I'd guess an 8a or there abouts (for experts).

I was not thinking so much on the remuneration side but of job desirability. I never bumped into any data scientists when I was at the NHS. I don't know the reason for that.

[The Ombudsman]

If you view it like that sure.  You also have the power to do something about it.

Yes, opt out. Which I've now done.

[TrenterPercenter]

Yes, opt out. Which I've now done.

So the process has worked for you.  Good.

[Zetetic]

The NHS would pay more for this band, I'd guess an 8a or there abouts (for experts).

It varies, but 8a is not unknown, for better or worse.

I was not thinking so much on the remuneration side but of job desirability. I never bumped into any data scientists when I was at the NHS. I don't know the reason for that.

There's more than few, depending where you look, although some with less ridiculous job titles.

Which NHS? English?

[TrenterPercenter]

It varies, but 8a is not unknown, for better or worse.
There's more than few, depending where you look, although some with less ridiculous job titles.

Hiya!

I like to refer to myself as the grand number chimp; spending my time stealing peoples personal freedom numbers which I then put back together as the code to their souls before trading on to our dark lord Shaitan.

[The Ombudsman]

So the process has worked for you.  Good.

Do you really believe the process is a good one? Literally finding out by hearsay? I'd say that was altogether pathetic.

[The Ombudsman]

It varies, but 8a is not unknown, for better or worse.
There's more than few, depending where you look, although some with less ridiculous job titles.

Which NHS? English?

Yes, NHS England.

[TrenterPercenter]

Do you really believe the process is a good one? Literally finding out by hearsay? I'd say that was altogether pathetic.

Nope I think it should be better and it should be delayed because of Covid.  I just don't believe that this massive thing that happened in the last two years hasn't impacted on them getting the message out better.


It's just a matter of balance really.

[Zetetic]

Yes, NHS England.

This is practically a compulsion at this point, but: Do you mean "NHS England" (the front of the Westminster DHSC) or the English NHS?

Edit: Noting that this perhaps illustrates a certain urge towards whatever arrangement is the most obfuscatory.

[TrenterPercenter]

Yes, NHS England.

8a is a much higher pay bracket in NHS England or The NHS in England[nb]for Z's sanity[/nb]

[The Ombudsman]

This is practically a compulsion at this point, but: Do you mean "NHS England" (the front of the Westminster DHSC) or the English NHS?

Edit: Noting that this perhaps illustrates a certain urge towards whatever arrangement is the most obfuscatory.

Let's say the NHS in England. I think that is likely what it was.

There was funding from all sorts of different NHS places.

Edit for spelling.

[Goldentony]

probably mentioned, but I once did a job in a building that used to be a doctors but now housed tons of old medical case folders full of all sorts of insane shit we werent warned about and most of the staff there were full on 'fuck off mate' territory, the staff was mostly temps but then three weird older people, an ex army guy, some proper salt of the earth bloke and a dinner lady with the boss a lad who'd just come back from a holiday resort having previously ran a bar or whatever, anyway in the stunned horrified shitty workspace they told us that sometimes theyd just spend hours reading peoples shit and throwing the folders anywhere and texting people things, I fucked off after a day but that sounds better than this

[Buelligan]

Do you really believe the process is a good one? Literally finding out by hearsay? I'd say that was altogether pathetic.

This.  Although pathetic relies on one believing that this valuable prize is not being leveraged out of the hands of those it belongs to [nb]the subjects, who have paid for the data to be recorded and paid for it to be stored in the belief that it is irrefutably private and personal[/nb] intentionally and for gain.  Not the money government will receive, not that pittance, the profit the buyers will make from it later.  That's where the real money will go, to the private sector who will shamelessly exploit our private data for their profit and the weakest to the wall.

And another thing, just think about the trouble the po-po have to go to to get their hands on peoples' medical records, if you want a yardstick by which to judge the subject of this material's belief that it will remain inviolate.  That's correct, people, foolishly believe what they're told by government.  Increasingly less now.  Imagine when every prop in the trust tunnel has been nibbled through by these thieves, think about the value of rule by consent then.

I found out about mine being hived off to the highest bidder by browsing CaB.  Believe me, I take my personal privacy extremely seriously.

[Flouncer]

For me the main point is, it's an absolutely fucking massive stretch, to believe that this data is just going to be handed over to organisations who are doing benevolent medical research. It's perfectly clear that this unscrupulous cowboy government is going to sell it off to LITERALLY ANY CUNT willing to pay for it, to be used for whatever nefarious purposes they desire.

[olliebean]

The fact that it's being implemented with so little notice and so little intended publicity is a massive red flag, frankly.

[TrenterPercenter]

"Britain has had enough of experts."

NHS Digital isn't the government.

And...

The data will only be used for health and care planning and research purposes by organisations who have a legal basis and legitimate need to use the data. We publish the details of the data we share on our data release register so we can be held to account.

Shouldn't be too hard to find out if your data is being sold to insurance companies (which would be illegal).

[olliebean]

The data will only be used for health and care planning and research purposes by organisations who have a legal basis and legitimate need to use the data. We publish the details of the data we share on our data release register so we can be held to account.

Yes, about that... http://theysolditanyway.com/

In the last month for which a release register is available (2021/04), 92% of releases ignored opt outs.

You'll forgive me if I don't trust them 100%. (8% is evidently more realistic.)

[Buelligan]

Why should people have to police this data?  It was recorded on the understanding that it was confidential.  Private.  Now, it's being sold off without permission, you have to find out that they're doing it and do something active to stop it.  Even then, you can't protect information about your family, very relevant where heritable diseases are concerned.  But you just don't have any rights because there is money to be made, so fuck your privacy.

[TrenterPercenter]

Yes, about that... http://theysolditanyway.com/

You'll forgive me if I don't trust them 100%. (8% is evidently more realistic.)

Yes I looked at the link. I think you might be indulging in someones hobby or obsession.  Have you not noticed that every university, hospital and NHS Trust is on that list.

I suppose that is just more evidence that they are all at it.  I know the website conforms to what you want to hear so it's evidence enough for you. I get it.

Anyway why isn't the author getting the lawyers involved; they've got stone cold evidence that opt outs have been ignored these are fineable offences under ICO?

[Pinball]

https://medconfidential.org/how-to-opt-out

[mothman]

It was almost comical. Got a text from my mum who was stressing about it after reading Marina Hyde's (yes, I know) article on it in the Guardian (yes, that too). So I sent her the NHS Digital opt-out link and half an hour she and my dad were sorted. It really is that easy, even my mum can do it...

[Zetetic]

Other than that being the wrong opt-out, yes.

[Pinball]

Yes, the NHS has made it a little more difficult than that one link to exercise your right to privacy, unfortunately. Paper is needed. See my link.

[Zetetic]

Just pop a Magna Carta on your door in sheep's blood.

[Buelligan]

It was almost comical. Got a text from my mum who was stressing about it after reading Marina Hyde's (yes, I know) article on it in the Guardian (yes, that too). So I sent her the NHS Digital opt-out link and half an hour she and my dad were sorted. It really is that easy, even my mum can do it...

Not if you don't know your NHS number.  I don't.  Haven't even been in the UK for years.  There is a link you can use to find your NHS number but it only works sometimes, not for me who doesn't have an address in the UK and the computer can't link to a GP, presumably because the last time I was registered was so long ago my records are now archived somewhere.  So I can't opt out even though I definitely, absolutely, want to.

I don't even have an MP I can write and complain about it to.

https://www.nhs.uk/nhs-services/online-services/find-nhs-number/

[Zetetic]

Edit:Now I'm confusing myself.