Mammoth grab of GP patient data in the UK set to benefit private-sector market access as rules remain unchanged

Evidence from NHS Digital's website suggests that patient data held by GPs in England will be available to private-sector companies to help them understand market opportunities in the UK's health service. In response to government plans to start collecting patient data held by GPs into a central database, NHS Digital said it …

[Pascal Monett]

NHS Digital is without a CEO right now

According to Wikipedia, they're looking for a new CEO to replace Mrs Wlkinson who is already gone. I'm not sure that that is a good sign.

For the rest, the wiki paints a reassuring picture of the organization, but hey, it's a UK Gov IT project, what could possibly go wrong ?

[Arthur the cat]

Re: NHS Digital is without a CEO right now

but hey, it's a UK Gov IT project, what could possibly go wrong ?

As Elizabeth Barrett Browning said, let me count the ways.

[I'll get back to you when I hit ℵ₀.]

[TRT]

Concerning...

I mean I work very, very close to healthcare and yet the business of Big Pharma is opaque even from that distance. I just can't connect the rationale behind access to these data by someone like Wilmington. What value is it in there for them? There are some obvious things like knowing that GPs in a certain area have a higher than average number of e.g. arthritis patients and therefore they can target pushing their brand of arthritis pill / care package / support service to all the GPs in that area... how much is that worth? Are GPs & practice managers too busy to shop around? What gives?

It also reeks to high heaven that the kind of management who are the gatekeepers to these resources may be referring to a handbook of good practice written by the very people that they are charged with justifying and clearing for access! Smacks to me of the Young One's book of Household Rules where every rule carries the codicil "except Mike".

[Vometıa]

Re: Concerning...

The Young Ones Book is enormously underrated and is an invaluable guide to life. It also contains everything you need to know about CBT many years before the NHS decided it can cure everything; IIRC, "Auntie" Mike's Problem Page dispensed the following wisdom: "My radiator gurgles when I hit it with a heavy book." "Don't hit it with a heavy book."

It's probably about time I gave Vyv's lager & curry diet another try. "Hot lager and Ovaltine is revolting", he helpfully points out, though tbf most lager is revolting in any configuration.

Edit: note to self, don't try to get around the "you can't re-use an old screen name" annoyance by putting similar-looking-but-different Unicode characters in it...

[PeeKay]

Re: Concerning...

I foresee data mining, and then selling the resultant data to, say, insurance companies as just one example.

Let's face it - the insurance industry would just love to know your family's medical history so they can ramp up pricing (and lower payouts).

In my opinion, they can sod off.

[Gordon 10]

Re: Concerning...

But... but .... that would be illegal.

[TRT]

Re: Concerning...

Hm... There is a very strong case for linking familial records, for genetic disease... but is this done? Will the data show "family history of diabetes / cancer / heart disease / schizophrenia" etc? In which case deanonymisation would be data that could be potentially combined with an application for insurance cover whereby the individual's details ARE known by an organisation - see my later post where I questioned the research methodology of deanonymisation and the value of it; you have answered my question there. Thank you.

[ThatOne]

Re: Concerning...

> a very strong case for linking familial records, for genetic disease

Yes, that's the obvious excuse, but would any serious researcher publish a paper based on commercial datamining (meaning the data was structured (if not "enhanced") for added commercial value, not added precision)?

That been said, I guess that obvious excuse will indeed be used any time somebody needs to give some semi-serious explanation, but the truth is much simpler:

Nowadays a population is a resource, and who are the politicians to resist the pressure (and the promises!) of the commercial entities drooling over that easy profit potential?

As for Joe/Jane Public, (s)he has to realize that, no matter if (s)he pays or not, (s)he is a mere product to be "monetized" no matter the consequences. Human dignity my eye.

[onemark03]

... very strong case for linking familial records, for genetic disease ...

Yeah?

Try applying to buy life assurance under such a régime.

[Neil Barnes]

Re: Concerning...

Exactly my concern. I'm none bothered by using my medical history to improve the lives of others, but I don't want to see a case of 'oh, you've had diseases X, Y, and Z, people who had diseases X, Y, and Z also bought policies/patent nostra (or even real medicine)'

[ThatOne]

Re: Concerning...

> to improve the lives of others

No chance. The whole and only point is to sell you stuff.

Improving peoples' lives doesn't yield any monetary profit, you make way more money by exploiting peoples' misery.

[Woodnag]

Opt out BS

Considering that the root record is the NI number, it would be easy to have an opt out mechanism that didn't involve the GP, overloaded as they are. It's clearly making it difficult to do, and very difficult to validate.

Ditto organ donation. A person can register their wishes, but the next of kin can be bullied into reversion of that wish post-mortem.

[EnviableOne]

Re: Opt out BS

it's not, the root record is the NHS number (or the systems specific code of one of the system providers (normally EMIS or TPP))

The national data opt-out was devised pre GDPR, and it's not consistent with it.

IMHO, from GDPR it should be an opt-in, and the uptake would be considerably worse than the donor register.

[nematoad]

"...as well as the Independent Group Advising on the Release of Data (IGARD), also part of NHS Digital."

How the hell can they be independent if they are part of NHSX?

No,this is just smoke and mirrors to try and hide the commercialisation of peoples medical histories.

I have sent in my opt-outs from this raid on my personal medical records and I really hope that many others will as well.

Who do these leeches (pun intended) think they are, God?

[spireite]

I assume it is this!!

https://digital.nhs.uk/services/national-data-opt-out

[Gordon 10]

Re: I assume it is this!!

Thanks for this. You can also use it to check what you set it to last time you read about an NHS data grab on The Register. FWIW mine was opted out

[Steve K]

Re: I assume it is this!!

Not entirely - you also have to print out a form regarding your GP records, I believe.

[Howard Sway]

a range of our customer engagement tools and go-to-market capabilities

Looking forward to the next time I end up in hospital, and they start referring to me as a "customer".

It'll be even more galling than when the train companies stopped calling us "passengers" and started using that c word instead.

[Alumoi]

Re: a range of our customer engagement tools and go-to-market capabilities

Both are offering you a service you pay for. What's wrong with customer? Wait until they get to consumer to bitch about :D

[Anonymous Coward]

Re: a range of our customer engagement tools and go-to-market capabilities

I'm sure you'll understand my rage when the Child Support Agency (CSA) referred to me as a "customer" on the weekly avalanche of paper that came through the door when they repeatedly failed to accurately process the reams of forms they had me completing leaving me with around £60 a month to buy my train ticket to work, pay my mortgage and buy food etc. That's as well as the regular threatening demands for repayment of historic overpayments some years later after I thought we had reached an equitable assessment that resulted from them not being able to process their own forms in any sensible fashion - I mean they had my employer details, my national insurance number, a declaration that I was in full time employment for 40 hours a week and yet said I had a monthly income of £0 (hello... did no-one think of doing ANY sanity checking on the inputs?) which some bozo must have over-written that field when they entered the other parent's details from their form which was submitted at a different time.

When I did a FOI request for my records to demonstrate that the error resulting in overpayment was their fault, I noted my records called me "belligerent" and a "difficult individual" simply because I'd asked them NOT to refer to me as a "customer". I'd referred them to the dictionary definition of that word which was "A person or organisation that buys goods or engages the services of a professional." and then pointed out that I had not bought anything from them, I hadn't engaged their services (I'd had them thrust upon me by the DSS as I was separated and the other parent was claiming benefits), and I didn't consider them to be in any way professional!

It's definitely grating to hear that word used as some form of passive-aggressive politeness exercise (is there a better word for this use of language?) It cheapens the word and reduces its value. I think the same mentality came over from the government best practise manual into earlier versions of ITIL - the people we worked with, in the same organisation, all stopped being "users" or "colleagues" and became "customers" of the helpdesk.

[Eclectic Man]

Re: a range of our customer engagement tools and go-to-market capabilities

In the book 'The Blunders of our Governments', Anthony King and Ivor Crewe discuss in some detail the blunder that is the Child Support Agency (also known as as the 'Complete Shambles Agency'). Many other blunders are also described. You have our sympathy.

[Anonymous Coward]

Re: a range of our customer engagement tools and go-to-market capabilities

It's the one time I've been before a judge, when I took them to court over the initial assessment which took 12 months for them to complete.

They had attached my pay-packet for both a swingeing amount of Child Support (£450 out of £630 take home a month), plus an arrears payment of a further £120 a month for 5 years, as they backdated the "award" to the child's birth, despite the delay being down to them.

I was a mere stripling of 20 at the time and had two "lapses of judgment" - the first having very recently given me a beautiful grandchild and the second was freely giving over my details to a government department in the interests of being law-abiding and doing my civic duty.

Oh how I rejoiced when The Witch was finally dead! Bitter? Moi? You bet!

[Anonymous Coward]

Re: a range of our customer engagement tools and go-to-market capabilities

> In the book 'The Blunders of our Governments',

I commend the 7543 page Abridged Version to new readers.

[ThatOne]

Re: a range of our customer engagement tools and go-to-market capabilities

> Looking forward to the next time I end up in hospital, and they start referring to me as a "customer".

Look forward to the next time you end up in a hospital and you have to watch a dozen unskippable ads before getting any help... Help given by the undertrained and underpaid med student who is on his 48th hour of non-stop service.

[EnviableOne]

Re: a range of our customer engagement tools and go-to-market capabilities

It already happened, you are no longer a patient, you are a service user.

and busses used to serve you, they now just carry you. PSV became PCV

[alain williams]

Your data will still get shared

There are some exclusions When your choice does not apply, one of which is When information that can identify you is removed - we all know how ineffective that is: Machine learning algorithm can identify 99.98 per cent of people in any anonymised dataset, so who are they trying to fool ?

[TRT]

Re: Your data will still get shared

I am curious about that research though. In order to "deanonymise" one needs to know the identity and certain identifying features to begin with. Is this to do with combining data sets? In which case the bigger they are, the harder it would be to combine because of the number of non-unique matches.

The example in the article, a male aged 30 born on 5th January living in NYC with a dog, two female children and driving a red sports car... you know who you are looking for anyway in order to be that specific. Are they talking about combining say the insurance accident record for red cars and sports cars and male drivers and age of driver with medical records of vehicle collisions... and what to find? That you have the same individual in both datasets and the data you can gather about them extends to what? Income bracket (possibly predictable from the fact they own a sports car and can afford a family), co-morbidities? Parking tickets?

Having said that, I disagree about the release of GP data to commercial organisations, especially when it's sold as regional healthcare provision which most people would understand as NHS rather than the private companies the NHS deal with.

[ThatOne]

Re: Your data will still get shared

> In order to "deanonymise" one needs to know the identity and certain identifying features to begin with

Or you just pay for the optional "companion database", which allows you to put names, (addresses, incomes and whatever else useful) on that data...

After all this is collected and assembled for commercial purposes, which means that if it allows you to pinpoint who to target its value is multiplied tenfold. Just knowing generally how many people have which problems is pretty much useless to marketers.

The people building this have already databases of who lives where, earns what and all that; It will be quite easy to link that to the new data of who has which health problem (and if some records are wrong, who cares).

[Anonymous Coward]

Re: you know who you are looking for anyway in order to be that specific

Not really - you just try to de-anonymise everyone you can in the dataset. This isn't really about finding the interesting Mr X, it's an in-bulk data trawl; followed by leveraging the new information to target/attack those who have now become accessible.

[Anonymous Coward]

Got my family's Opt-out forms signed & sent off to the GP yesterday

(assuming that they will honour them).

[Blazde]

Re: Got my family's Opt-out forms signed & sent off to the GP yesterday

As I understand there is some suggestion they'll stop honouring them in future because the type 1/2 opt-out differentiation is going away in favour of the 'national data opt-out' which GP surgeries must honour from September, so make sure you've registered with that too.

https://digital.nhs.uk/services/national-data-opt-out/information-for-gp-practices#practices-must-no-longer-record-type-2-opt-outs-

"Some patients will have a type 1 opt-out registered with their GP practice, which indicates they do not want their confidential patient information leaving the practice for research and planning purposes. These existing type 1 opt-outs will continue to be respected until the Department of Health and Social Care conducts a consultation with the National Data Guardian on their removal."

And if you just filled in a GP form for a type 2 opt-out it will be ignored because:

"GP practices must no longer use the type 2 opt-out codes to record a patient's opt-out choice as they are no longer collected or processed."

Leaving the unsurprisingly shambolic possibility that people who believe they're opted-out won't have.

[Anonymous Coward]

England

Please change the title to "England" rather than "UK".

[Mike 137]

"available to private-sector companies to help them understand market opportunities"

Everything and everyone (except apparently politicians) is now a commodity to be exploited for gain. But in this case you can apparently opt out. Not that you'll ever be able to find out if your opt out has been ignored.

[yetanotheraoc]

Prepare to be ignored twice

Of course your opt out will be worthless. If it were sincere then it would be opt in. But they still have an interest in minimizing the number of sham opt outs. Because when they ignore the opt out, you are going to complain. So the fewer opt outs, the fewer complaints they will have to subsequently ignore. And when the press investigates, they can truthfully say "there have been a limited number of complaints", followed untruthfully by "but on the whole the rollout has been a great success".

[Holes_in_pockets]

I made an account here just to thank the Reg for putting this out, I thought I kept up to date with any new data slurp but this one slipped my radar.

Also thanks to those here who are wiser and smarter than I am for finding the actual opt out link that I have used and passed around to anyone interested.

Planning they say, yeah as some have told me, planning would mean improved services, targeted resources and those people are mortified after reading this article, so its having the intended effect it seems, reduce as many opt outs as possible with selective wording.

[Barrie Shepherd]

Ruffled Feathers

The NHS feathers have bee ruffled!

They have put out the following trying to reassure the populous that all is good;

https://digital.nhs.uk/services/national-data-opt-out/mythbusting-social-media-posts

"Mythbusting social media posts about the national data opt-out"

I particularly like the double speak;

"We do not sell health and care data" (No we give it away)

"We do not share data with marketing and insurance companies" (No they get it from the others we share data with)

No mention of who else they do sell / share data with!

[sitta_europea]

If it will boost the coffers they'll try anything.

[Anonymous Coward]

Trying to highlight related issue with TheRegister

I've been trying to highlight a related issue regarding the Health Service, in my opinion, unlawfully sharing personal data for the past 8-10 years. I emailed TheRegister's UK editor in March and April and got no reply beyond an automated Out-Of-Office message. After reading last week's NHS article on TheReg I clicked on the author's name at the top of the page and filled in the "contact me" format early on Monday but have had no contact from that either so far.

If TheRegister is not interested in a potential story that's fine but I'd expect some sort of feedback rather than just radio silence...

[FlamingDeath]

Technology has outpaced human development

'We have guided missiles, and misguided men'

Do you trust anyone? in this day and age? considering everyone is obsessed with money, and how much you have of it?