[OT] UKLM: Subject: NHS data grab just around the corner

[Spike]

The group might like to be aware of this forthcoming data-mining exercise, whereby your data will be extracted from your GP record unless you opt out by the cut-off date. The entire thread, and the links contained in them, are worth reading.

Once out there, there is no way back.

There has been very little publicity. You won't get a letter in the junk mail, like last time.

The medconfidential site has a list of some 2000 codes, nearly all of which refer to STDs and related conditions, but there are very many more codes.

Note that you might need two opt-outs, one being a letter to your GP (medconfidential has a pro-forma) and an online one for hospital-related opt-outs. Links are in the thread.

The discussion on 'anonymising' is worth noting.

Message-ID: <s7ovtj$o80$ [e-mail]

Posted by Jeff Layman in UKLM

Quoted in full

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For those who thought the care.data fiasco was no more, beware! There is an even more extreme move to sequester our medical records for "data" purposes. More information at:

"According to an official announcement on the NHS Digital website (

), data held in GP medical records will be collected via a new service called the General Practice Data for Planning and Research data collection. It will replace the General Practice Extraction Service (GPES), which has operated for over 10 years."

The "General Practice Data for Planning and Research" (GPDPR) data collection, eh? No intention to invoke confusion and make it appear that it's part of GDPR and so all above board?

It's all being done very quietly with the hope that it will take place

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[Tim Lamb]

In message [e-mail]>, Spike [e-mail] writes

I don't think I care, Spike.

I suppose if I were paying for treatment, I might consider such information mine to sell.

Anonymising? Depends on the level. No names addresses a first step only. Practice location, patient employment would quickly identify a range of people: farmers, solicitors, teachers, police etc.

Undoubtedly, someone somewhere will make money out of this data but, potentially also some patient benefits to NHS funding.

[Robin]

I've never known the BMA miss a chance to criticise anything going outside the NHS (or anything this government does come to that) and the article quotes them as engaged and supportive. So I'm unbothered.

I would probably be anyhow given The Register:

a. has no claims the anonymised data can be linked to named individuals

b. cited campaigners and doctors mainly concerned about use of data outside the NHS. People like "Dr Neil Bhatia, a Hampshire GP and information governance lead". Lead for the BMA? Royal College of GPs? Nope. For a single GP practice with a dozen or so doctors

[Nick Odell]

As Spike has already said, I'd recommend that you read the article in El Reg and the thread in ULM and then make up your mind. If you are still cool with the data-grab then that's -erme- cool.

The annoying thing is that it would have been perfectly possible to provide data for medical research without compromising patient confidentiality but in order to make it commercially attractive they want to give away a whole lot more.

The care.data debacle took place under the Con/Lib-Dem coalition government but it shouldn't be forgotten that the ID card fiasco belonged to Labour.

Personally, I have no objection to carrying an ID card per se but I do object to a scheme (Labour) that channels everything about you into one authorative place so that if the cleaner unplugs the mainframe to power up their vacuum cleaner you instantly become a non-person. Not to mention hackers etc. I also object to a scheme (Conservative) that whether by accident or design will have the effect of altering the voting profile of the population. So you'll see I'm an equal-opportunities complainer: I hold all the political parties in equal contempt.

Nick

[Pamela]

Providing personal data for a government data mining excerise is a serious matter esecially as it potentially breaches privacy but aren't you the same Spike who completely fabricated quote in uk.politics.misc and when asked about the misleading quote insisted it was real? How do we know you're not crying wolf again?

Message-ID: [e-mail]>

[Max Demian]

Why? Where would you carry it if you were wearing swimming trunks? What if you forgot? What value other than allowing officials to ask for your "Papiere, bitte"?

[Steve Walker]

I am happy for my details (as in passport/driving licence) to be on record and to be available to the police to confirm my identity if I am stopped for any reason, but do not want to have an ID card that I have to carry. It is quite common for me to be doing some DIY then rush out to my parents to borrow something or to the shops to pick up a click and collect item, without changing my clothes or picking up cards and things that I would rather not have in my pocket when crawling under the car or similar.

As for medical records, as long as they cannot identify me, I am happy to contribute my records to further research.

[Brian Gaff (Sofa]

Yes one of the problems with annonamising data is that given enough of it it can easily be mined to find out with a pretty good accuracy, who any given person actually is, and you can bet there will be a market for that to sell you even more crap. I am already being annoyed by disability product spam even though I do not use a wheelchair, since I'm blind, but it does show that some dangerous stereotypical assumptions are made by these so called AI data aggregators. Brian

[Spike]

The system pseudo-anonymises your data by removing your name and the first line of your address.

While that is wonderful, is that what is left is your NHS number, which identifies you uniquely, and your post code, which can help locate you.

"Hey, look at this! There's someone in this street that's had an abortion at 15, got genital herpes, been vaccinated against yellow fever, had a broken engagement, and been divorced but shares the house with the ex-partner. Not a ball-buster to work out who that is!"

You would need to prove the quote was completely fabricated.

[Spike]

Look at this short list of non-medical conditions from the very long list of items to be collected (or grabbed). You could probably work out who is who in your post code:

Divorced couple sharing house Marriage Separation Divorce Marital problems Marital reconciliation Single parent Unwanted pregnancy Illegitimate pregnancy Imprisonment record Battered wife ? history Battered husband ? history Violent spouse Engaged Broken engagement Broken with partner Legal problem Criminal record Boyfriend relationship problem Girlfriend relationship problem In prison On probation On remand Extra-marital problems On conditional probation Subject to Anti Social Behaviour Order Imprisonment of family member History of abuse Suspected child abuse Prison medical examination Complaints about care Child maltreatment syndrome Maltreatment syndromes Place of occurrence of accident or poisoning, prison Homicide and injury purposely inflicted by other persons

[Richard]

Which scaremongering source please?

[Spike]

"Sensitive codes to be collected

Below is a list of the sensitive codes relating to information held in patients? GP records that the Government will copy, knowing that they are sensitive. There are other groups of codes not currently listed, which include things like abortion codes. The NHS did have an ?Information Standard? defining such sensitive codes, but the existing one was out of date, no-one did the work to replace it, and it was deprecated in March 2021?

This list is a (small!) subset of the complete set of codes that will be extracted from the GP records of every man, woman and child in England by the ?GP Data for Planning and Research? or ?GPDPR? programme. We provide a way to check what is in the longer list.

Everyone who has not fully opted out by the time their data is first extracted for GPDPR ? uploads of patients? data are currently intended to begin from 1 July 2021 ? will have their entire GP history extracted, processed, and disseminated to those given access to any GP records:"

[Richard]

<snip>

<snip>

OK. Having rummaged around the net to glean a bit of info, it is very easy to opt out should one want to.

Some links other than those provided by the OP:

To manage your options

The counter to "people of concern" views

[Nick Odell]

@Max @Steve I'm sure I'm not the only person here who's lived in a place where ID cards are the norm and you don't debate whther or not to take the card with you when you leave the house any more than you think about house keys*/car keys*/money*/phone* (*add to or delete as appropriate). You just do it. The only difference that I can see is that in those countries keeping tabs on the population is overt: we've been doing it in increasingly covert ways for years. Again, my real objection would be to an ID card that unlocks the repository of everything known about you (the abandoned Labour plan) rather than a form of identification that is valid in all the different places you make transactions. IE a government portal you have to pass through to get to your bank vs. a number that the bank will recognise when you go to them directly.

Well, this is where we came in, isn't it?

Nick

[Nick Odell]

I can tell you exactly when I realised the power of metadata: it was Tuesday 1st May 2001 and I think it was at about eight o'clock in the evening.

Paul Vickers was presenting a programme on BBC Radio 4 called "What Do They Know About Us?" As an example, he had picked a person at random and whilst carefully avoiding naming them, showed examples of how the little bits of their life appeared all over this exciting new thing, the World Wide Web. I'm not going to repeat exactly what he said because even without the name I immediately knew that I knew who he was talking about and the same information would identify them today. Long story short: I contacted the person, they contacted the Beeb, Mark Savage (the programme producer) edited that section out of the programme repeat and AFAICT no actual harm was done. But it remains that surprisingly little innocuous information from different places can combine into a very powerful tool.

Nick

[Adrian]

In message <s8dhfi$7d4$ [e-mail]>, Richard [e-mail]> writes

Thanks.

That was relatively painless.

Adrian

[Chris Green]

I regularly leave our house without *any* of those.

[Andy Burns]

But I think that only stops that data being slurped from NHS Digital's central servers, you ought to check how to stop it being slurped from your GP's servers too.

[Nick Odell]

Fairy Nuff. I don't have car keys and never take my phone but if I forgot to take my house keys I'd have to dig up the garden and try to remember where I buried the spare set.

Nick

[Richard]

And there is this little bit: <q>

Currently national data opt-outs will be considered on a case by case basis but may not apply during the emergency period due to the public interest and legal requirements in sharing certain data. For example, in the case of the Shielded Patients List, the opt-out was not applied due to the public interest in those patients receiving advice and support - we thought it was important that at-risk patients are protected. </q>

from here:

So it seems that no matter how much one protests, the data will be shared if deemed necessary.