BMA and Royal College of GPs refuse to endorse NHS Digital's data grab from surgeries in England

The British Medical Association and Royal College of GPs today told NHS Digital they do not endorse the UK government's imminent haul of English GP data – dubbed "the biggest data grab in the history" of the service. The BMA, the powerful UK doctors' union, has separately called for a delay to the programme until the public is …

[Adelio]

What is the rush, unless they are expecting to get a load of cash from "other" parties.

Spend 2 years getting it right and broadcasting the message of the benefits and how it is to be used. There have been too many instances where things are rushed and done badly.

[iron]

The rush is to get it done before you realise what is happening so you can't complain that they just gave all your medical data to Palantir, Google, Facebook, Experian, Equifax, BBC TV Licensing, your insurance company and Uncle Tom Cobbley because he asked nicely.

The only place you won't find your mediacal data? Your GP or any hospital you need to visit.

[oiseau]

What is the rush ...

They can't wait to make a deal with the US medical insurance corporations.

Don't forget that the Tories are in N° 10.

To them, the National in NHS is not a good thing.

Unless it is making money for someone.

Preferably a chum ...

O.

[Teejay]

Total disregard for the patient

I think the absolute disregard for privacy inherent in this quick-datagrab-scheme shows both ignorance and arrogance on the side of those responsible. Quite probably, nobody wants their very private medical information in the hands of anyone but their doctor and the close surrounding system. This all reeks of scraping as much data as possible, before media and patients wake up to what is going on. On a ministerial level, it once again feels like cronyism and a nice little cottage on the Cornish coast.

[TimMaher]

Cornish coastal cottage

Probably on the outskirts of St Ives.

But seriously, I have worked with these people, in my dim and distant past, and their arrogance is breathtaking.

Pint, ‘cos it’s Friday somewhere.———->

[Teejay]

Re: Cornish coastal cottage

Cheers!

[Anonymous Coward]

Re: quick-datagrab-scheme shows both ignorance and arrogance

arrogant, absolutely, ignorant, oh QUITE the opposite...

[Anomalous Cowturd]

Sneaky in the extreme.

Nice of them to publicise it so widely.

The opt-out process starts here: https://your-data-matters.service.nhs.uk

[Howard Sway]

Re: Sneaky in the extreme.

Thank you for this link.

It took about 2 minutes to complete the details, get the text and opt out. However, this is apparently not the end of it. Reading this site and confirmed at the relevant NHS page you also need to go through an additional process to opt out of sharing your GP data, which involves (wait for it) printing out and filling in a paper form that then must be delivered to your GP surgery. Presumably down some broken stairs in a basement, etc,etc. I wonder why "NHS Digital" insists on such an analogue pain in the arse opt out process? It's almost like it's designed to make it as hard as possible.Or maybe the GPs have to punch the data onto cards to be delivered to some wheezing old mainframe somewhere...............

[Anonymous Coward]

Re: Sneaky in the extreme.

I'm worried about the paper forms. I handed in copies for my family and I don't think the receptionist knew what the forms related to. Hopefully someone else in the back office did know but how do you confirm if the opt-out has been actioned?

[Anonymous Coward]

Re: Sneaky in the extreme.

...if the opt-out has been actioned?

Actioned? What strange language is this?

[Terry 6]

Re: Sneaky in the extreme.

"Actioned". It's ugly, but it's not unusual

[JohnMurray]

Re: Sneaky in the extreme.

Hand any GP forms to the practice manager.....

[Anonymous Coward]

Re: Sneaky in the extreme.

AC> I'm worried about the paper forms. I handed in copies

This is what registered letters where invented for.

[Martin-R]

Re: Sneaky in the extreme.

Wow, they kept that well hidden! We shall see what the surgery make of the form...

[Stuart Castle]

If it’s so good for the patients, excellent. Be open about he fact you are doing it. Open to the point of taking out adverts, and announcing it on television or the web. Five people a reasonable amount of time (certainly more than the month and a bit we’ve been give ) to opt out.

I’d even go so far as to argue that beating in mind the inherently personal nature of the data, and that given some know how, even anonymised data can be tied to specific people, give people the chance to opt in, not out. People who can’t make the decision to opt in for whatever reason should not have their data exposed by default.

[Crypto Monad]

We have the web now: it could be made opt-in on a case-by-case basis.

"We have a request from <insert company> to perform research on <insert topic>. For full details of the study see <insert link>. Do you consent to be included?"

[Anonymous Coward]

Let's call it the "GPDPR"

So there's no chance of people confusing it with regulations designed to *protect* your data.

[Terry 6]

Re: Let's call it the "GPDPR"

Yup. and also makes it a bit harder to find on Google- especially with Google's propensity to give you the results it thinks you ought to be searching for.

[big_D]

Re: Let's call it the "GPDPR"

Doesn't this fall foul of GDPR anyway? Any service has to be opt-in, not opt-out.

[Peter X]

Re: Let's call it the "GPDPR"

My guess is - they don't care. If it did fall foul of GDPR, then worse-case, the NHS will be fined for leaking data, but that won't affect all the companies that hope to access the data... i.e the same companies that all the people concerned likely have shares in or are on the boards of.

[Terry 6]

Re: Let's call it the "GPDPR"

And ironically, these same people (possible disguised as a "lobby group" who "care" for the NHS) will point to the NHS' failing in this matter and use it as one more piece of ammunition to dismantle the NHS.

We see the same with the BBC. Handicap the BBC as much as possible, reduce the amount it can afford to spend on public service and quality drama broadcasting, damage its credibility for fair news broadcasting by interfering with it. Then point to the reducing trust and popularity- failings that they actually caused - as a reason to remove it.

[Gordon 10]

Re: Let's call it the "GPDPR"

That’s the bit I don’t get. How can it be informed consent when it’s auto-opt-in?

[Anonymous Coward]

Re: Let's call it the "GPDPR"

The NHS has a broad set of exemptions from the GDPR.

In any case, the GDPR doesn't always require consent to process your data. The NHS could easily claim legitimate interest to use the data for planning NHS services, or for research into cures for disease. In that case they don't need your permission, but you can object (i.e. opt out).

They might also claim it's in their "legitimate interest" to sell the data to third parties, because that would help fund the NHS, and obtaining funding is clearly in the NHS's interest. But such "legitimate interest" has to be balanced against the rights and interests of the data subject. Here, they are more likely to claim that anonymised data is not personal data.

[nematoad]

No, No, thrice no.

Well, the good news must be slowly leaking into the public sphere. My sister who is a rampant technophobe caught wind of it yesterday and immediately asked me if I had heard of it. Of course I had and got in my opt-out in sometime ago when this topic last aired on El Reg.

If my sister is now aware of this data-grab then I reckon that the shit is about to hit the fan big time as people find out about the greedy manipulative bastards running this scam.

If they wanted to be a leech on society why don't they go and get a job with the Facebook, Amazon and the like?

Oh, my sister has now got her opt-out in as well.

[Steve K]

Re: No, No, thrice no.

Has she done the paper form to her GP too?

[Terry 6]

Re: No, No, thrice no.

I posted a comment about this on the "Next Door" website. Doing my best to scupper sneaky behaviour.

[Mike 137]

Bring the profession along?

"The engagement exercise was trying to bring the profession along with the process and have its buy-in...."

In other words, to persuade medics to stop complaining about the government breaching the privacy of patients in respect of the most sensitive categories of personal data (as defined by statute). The principle seems to be "demand it loud enough and often enough and they'll eventually give in".

But of course, regardless of objections, it'll happen anyway, and, interestingly, we've already been told that the "opt out" we've been offered will at some point be "replaced" by another - i.e. will cease to be respected, so we'll have to go through the process again under whatever terms we're then thrown. I'd be delighted if someone with sufficient resources were willing to take this whole issue to the Supreme Court.

[Anonymous Coward]

the incredible irony that the opt-out service on the NHS website can't find my details to enable me to opt-out, but I'm sure will find my details to share them with friends of Tory ministers.

[Anonymous Coward]

My understanding is that this scheme relates only to those registered in England. Would you happen to be in Scotland, Northern Ireland or Wales?

Interesting to ask though, what if you need a GP while on holiday in Dorset from Aberdeen?

[Caver_Dave]

Practice manager

I filled out both the online and the paper forms. With the paper form I added an extra page explaining why I was opting out. I got a nice response from the practice manager thanking me for explaining about all these things she knew nothing about!

[Roland6]

And still no word form the ICO...

Perhaps El Reg should ask the ICO for comment - it might wake them up...

[Terry 6]

Re: And still no word form the ICO...

You forgot the icon - done it for you.

[Bob9911]

So glad I left NHS Digital

I worked in NHSDigital for quite a number of years and over that time it changed from being patient-focused. These days they appear to be out of control, doing what they like under the guise of "patient care".

Really, no-one in senior management had the intelligence to think "Hang-on, 6 weeks isn't long enough to inform millions of people about this"?

Extreme arrogance indeed.

[JohnMurray]

Re: So glad I left NHS Digital

Remembering the shit-storm that hit them over the care-data debacle, I expect the short notice was intentional....

[Terry 6]

Re: So glad I left NHS Digital

Does anyone really doubt that they had no intention of seeking "informed consent " for this? None whatsoever!

[Sean Key]

To learn more and download the opt-out forms....

For an easy read guide and downloadable Type1 Opt Out forms please visit https://www.digitalhealthcoachuk.net/gpdproptoutexplained

Loads more info on digital health here too.

[JohnMurray]

Always remembering that your anonymised data is going to be extracted whatever form you fill-in/send....

[MrMerrymaker]

Doesn't matter. You can't not bother just cause of that. Don't spread this.

[Anonymous Coward]

"Think of the children"

This was (is) the usual chant from politcos when they want to install backdoors to snoop in internet communications.

*

Strangely, this chant is COMPLETELY ABSENT when they want to slurp all the medical records they can find!!! How many five year olds are writing to their GP to opt out?

*

How many parents are doing opt out forms for their kids?

*

On both counts (that would be "backdoors" and "NHS opt outs")......it looks like hipocrisy plus STASI!!

[Terry 6]

Re: "Think of the children"

Being blunt "Think of the children" didn't seem to be the mantra when they were resisting free school meals for the holidays, either.

[anothercynic]

Well, I intend to write to NHS England to make it clear that my opt-out also applies to any future projects, not just the one they're doing it for now, and will demand a confirmation of said opt-out to ensure that they know they're on the hook if they ever use the data on the basis that "oh, but they didn't opt out".

I am opting out permanently (with exceptions made for projects that I myself will share data with).

[Whitter]

Does this include historical data?

I lived in England for a year or two many years ago, so there will be some records of that somewhere.

However, I don't think I have any means to avoid this data grab if it does include historical data of people no longer in the NHS system in England/Wales.

[Dale 3]

Opted out

It is obviously not intended for public benefit, or they would have had Boris or Matt bleating about it at every possible opportunity. Not even a peep in the mainstream media, that I noticed, and the first I heard was the previous Reg article at which point I immediately went and opted out (both ways - paper and "digital", not that I should have needed to). On principle, since if they're trying this hard to not inform people, it can't be good.

[Coastal cutie]

“The new programme for collecting data has been developed in collaboration with doctors, patients and data, privacy and ethics experts to build on and improve systems for data collection."

Whose views and concerns we have promptly ignored.

[Terry 6]

Doesn't say which doctors or which "ethics experts" etc. And being slightly cynical, if they're allowed to select their own "experts" they aren't going to choose anyone who'll give them the bad news are they.

"Tell me Dr. Ambitious who went to Eton with me, are we doing the right thing?"

"Ah, Mr. Doingwell-Thankyou who studied PPE with me in Oxbridge and now runs a consultancy firm, is this an ethical procedure?"

[Anonymous Coward]

So?

What's new? Your tax data is already shared with Google (that's what the "Digital" section of HMRC seems to be tasked with), so this is just more of the same.

Just because the Americans stopped talking about TIA doesn't mean they stopped implementing it wherever possible. There's money in it, so fat chance to keep them away.

[Anonymous Coward]

The timeline is far too short because NHS Digital has not transparently and actively engaged

but... that was exactly the point, bury the bad news quickly, just a little prick, won't hurt, you won't have to do a thing, see? DONE!!!

[Cuddles]

Literacy isn't the problem

"communications have been limited to NHS Digital's online platforms and by extension only those who are digitally literate"

I'd consider myself reasonably digitally literate, but that doesn't help if I have no reason to ever visit NHS Digital's online platforms. With only 6 weeks given in which to opt out, the vast majority of healthy people would never see any of these communications. Even my parents, with a fairly exciting array of drugs and regular checkups, can easily go longer than that without needing to see a doctor. It doesn't matter how good people are at handling a website if most of them will never actually see it.

[Hooky]

Data grab postponed unti September

BBC report today says the data store is postponed until September

https://www.bbc.co.uk/news/uk-politics-57400902

Now is the time to get people to opt out and hopefully kill this thing.