Key aspects of Palantir's Federated Data Platform lack legal basis, lawyers tell NHS England

NHS England has received advice from lawyers saying key aspects of its controversial Federated Data Platform (FDP) lack a legal basis, meaning that unless a solution is found, it must allow citizens to opt out of sharing their data. The FDP is being built by US spy-tech biz Palantir following the award of a £330 million seven- …

[Julian Poyntz]

Internal

While I find it bizarre that my medical record is not shared between relatively close NHS services, I want my information shared with all NHS services, but NOT, via a 3rd party and especially a spy tech company. Get yourself a decent internal team and build it yourselves

[elsergiovolador]

Re: Internal

It has to be via 3rd party that can slice and dice it then repackage it and sell. How else do you expect politicians can deliver to their "supporters"?

[Ken Hagan]

Re: Internal

It is extraordinary that the politicians keep trying to do this. For many people, this is the most sensitive data that anyone keeps on them. For any scheme to avoid being boycotted by most of the population, it needs to be "obviously completely private".

And when I say "boycott" I mean "If you don't provide an opt-out, which we will use, then we will vote you into oblivion and then hound you personally through every legal means for the rest of your time on this little rock.".

I'm sure sharing medical data, both for treatment and research purposes, is a good idea. I wish someone would step up and propose a system meeting the requirement in my opening paragraph. But this isn't it.

[John Smith 19]

"t is extraordinary that the politicians keep trying to do this. "

Not politicians.

When y ou did into these seems you find the usual group of career civil servants and govt con-tractors keen to "help" them.

Note the persistent response to concerns about privacy and sharing with 3rd parties. Roughly

"There is not problem. We don't need your permission"

"We asked for an expert legal opinion and they said it's fine"

"Actually they didn't but we're sure we can square by the time the system goes live."

The ongoing arrogance of the NHS bureaucracy never ends. One more time. It is not your data it is patients data. Data fetishists got to fetishise. :-(

[Gordon 10]

Re: "t is extraordinary that the politicians keep trying to do this. "

Nope. Convenient libertarian scapegoats that Civil Servants are I think you'll find its *ALWAYS* Politicians who make these directives and then the Civil Servants that have to try to find wiggle room between the batshit directive (work with Palantir) and the Law.

Anyone who believes the Civil Service is the problem here and not the politicians is either a libertarian, a fantasist or a Reform or other Gammon supporter (some would say all these categories are the same).

Stop enabling shitty politicians by blaming it on the Civil Servants aka the Deep State. Its nearly always lazy good for nothing Politicians snouting for a cushy Non-Exec role or a donation.

[Helcat]

Re: Internal

Should be Opt-In, not Opt-Out. Otherwise they'll play dirty tricks to claim you didn't opt out so sharing your data is fine.

[OhForF']

Re: Internal

>key aspects of its controversial Federated Data Platform (FDP) lack a legal basis, meaning that unless a solution is found, it must allow citizens to opt out of sharing their data.<

How in the world would the possibility to opt out magically add a legal basis? Legal basis can be informed consent but not opting out is not consent. Were blighty politicans crafty enough to allow NHR to assume consent unless people actively decline?

Our local policitans were sneaky enough to do that for our electronic medical record system. I am sure either national courts or an EU court in the end would invalidate that law but so far neither me nor anyone else has mustered enough energy for that fight in courts.

[MonkeyJuice]

Re: Internal

Why Palintir, who's meat and potato business is of the snoopy, overthrow the banana republicy for the jollies kind, would be qualified to even know what privacy looks like to a rational human being is beyond me.

I also fail to see how with a straight face they can assert they can anonymise this kind of data successfully. The security research does not bare this out, and I somehow think they may be aware of this.

Politicians and the average punter on the other hand, are a special case who probably aren't qualified to make these calls

Not that I'm calling for a technocracy, that also doesn't seem to pan out, but just a _tiny_ bit of competence and general awareness of the threat landscape would be a nice change.

[Dr Who]

Re: Internal

The internal development is done :

https://www.opensafely.org/

It's all about the lobbying, as we call it when we're being polite.

[UnknownUnknown]

Re: Internal

Hmm … EMIS as a core partner.

https://www.pulsetoday.co.uk/news/technology/emis-bought-by-us-healthcare-giant-for-1-2bn/

[Fruit and Nutcase]

Rogue Designer/Programmer

I think the "usual suspect" system designers and their associate programmers would have already done their deed on this system, so closing the stable door after that horse has bolted will be to no avail. Too late to have stopped our data being loaded onto the 3rd party systems.

[OhForF']

Re: Rogue Designer/Programmer

Aye, the only way forward is to let them run the system as designed by the "rogues" and alllow them persistent access to any data added in any NHS system.

Resistence is futile, your data is already assimilated?

[UnknownUnknown]

Re: Internal

I’d be happy for the simple tech enablement of being able to e-mail my GP Practice… but nope.

[andy the pessimist]

Re: Internal

It would be good if the diagnostic company could email me AND the hospital. I ended up getting a file which I could print out.

[GioCiampa]

Re: Internal

It's not as if internal IT teams, creating their own systems, don't exist - I work for one.

[elsergiovolador]

Grease

Sounds like there was not enough grease, so there is some friction now

[cyberdemon]

Re: Grease

I hope that grease is Sustainable Palm Oil

[Dr Who]

Re: Grease

Is the word

[TimMaher]

Re: Grease

In our local Morrisons there is a sign above the bakery that says "Creamed by hand in store".

Might be nice?

[Far out man]

Re: Grease

An old 60s joke was, you can whip our cream but you cannot beat our meat

[MrBanana]

Re: Grease

Local truck stop: Liquor in the front, poker in the rear.

[DoctorPaul]

Is opt-out even legal?

So the best I can hope for is to be given an option (well hidden?) to opt out. How about assuming opt out and having to specifically opt in?

It's a bad enough idea, but Palantir?! FFS

[elsergiovolador]

Re: Is opt-out even legal?

Remember that the law is only for little people. Governments can do as they please and they can always amend the laws later if they forgot.

[Elongated Muskrat]

Re: Is opt-out even legal?

I mean, even if we didn't all know that Peter Thiel is an absolute RWNJ who routinely spouts far-right talking points, the fact that they named the company Palantir tells us all we need to know about exactly how evil they are. What next, is he going to forge us all some nice gold rings in order to "keep an eye on us"?

[ecofeco]

Re: Is opt-out even legal?

He would if he could.

[Dan 55]

Re: Is opt-out even legal?

I don't know why opt-out will make it all suddenly okay. An illegal platform is an illegal platform no matter if the data subjects are opted in or out and what their default option is. It's just a fudge to save everyone's face and not kick up a fuss.

[Woodnag]

Re: Is opt-out even legal?

An opt-out option is worthless if the opt-out is ignored. And it will be, partly because it will be very difficult to discover that a particular patient's data is shared, and partly because the punishment will be a cost of doing business fine 7 years later but no redress.

If this sounds too cynical, ask yourself who has received a custodial sentence as a result of the Grenfell disaster, final report out now.

[I could be a dog really]

Re: Is opt-out even legal?

Ref Grenfell. The police have already pointed out, for prosecutions there is a very different legal basis and evidentiary standard required. It's going to take some time to go through all the evidence that's come out of the inquiry and build a legal case against anyone. And as some have pointed out already, it may be that there's just enough deniability to stave off criminal charges. E.g. :

The cladding manufacturers will probably claim that the insulation manufacturer gave them flammability information that turned out to be incorrect - so they didn't knowingly cause it. The insulation manufacturers will probably claim they did provide information, but the cladding manufacturer misunderstood it. The architects will say that the cladding manufacturer said it was OK, so it's not their fault. The contractors who installed it will say they were just installing what the architects specified. And so on ...

We know a lot of people are "to blame", but knowing and building a case that will stand up in court to a "beyond reasonable doubt" test is a different matter. I think I should invest in a popcorn maker, it could be useful in 2025 or 26.

[John Smith 19]

it may be that there's just enough deniability to stave off criminal charges.

The blame avoidance diagram already exists.Here

[jdiebdhidbsusbvwbsidnsoskebid]

Re: Is opt-out even legal?

I suspect that any explicit opt-in/out will be written by those that want me to opt-in and will therefore be at best confusing and at worst deceptive, tricking me into ticking the box they want me to rather than me being fully informed.

[Michael Wojcik]

Re: Is opt-out even legal?

The lawyers didn't say an opt-out would make it OK. They said one was currently required by the applicable law.

[Ian Johnston]

My clinical data has already been stolen from the NHS Dumfries and Galloway. This project seems designed to ensure that in future it will be sold, leaked and stolen.

[Pascal Monett]

Welcome to the future . . .

[Pascal Monett]

"NHS England declined to comment"

Obviously. NHS knows that, when the inevitable lawsuit comes, it will lose.

There is, of course, the inevitable settle-out-of-court option, so all is well . . .

[Kevin Johnston]

Re: "NHS England declined to comment"

Obviously. NHS knows that, when the inevitable lawsuit comes, it will lose.

There is, of course, the inevitable settle-out-of-court option "with tax-payer money", so all is well . . .

FTFY

[Elongated Muskrat]

Re: "NHS England declined to comment"

Don't confuse the NHS with "NHS England", the QUANGO set up by the previous Tory government to funnel money out of the NHS into private hands.

[Anonymous Coward]

There is a way to do this kind of project the right way, see the UK Biobank.

In other countries' researchers in biomedical/clinical science see it as a paragon of how long term multimodal data on (rare) diseases should be centralized.

It's also (rightly so) very hard to access, so it enables (a lot of) novel research that will help the population who provide the data to begin with, but keeps the data private and protected.

If the objective is to help the UK population in detecting disease, improve treatment, using this kind of data, then it's clear to anyone in the medical research community that it's already there.

Instead, coming up with contracts where the UK pays, while removing the protections, for a company that has no business model that involves helping UK citizens, is the polar opposite.

I was under the impression that the current government spent a few years in opposition building a crack team of advisors to help take the right long term decisions.

[MonkeyJuice]

Unfortunately, like the 'safe and legal routes' we were promised, this all seemed to evaporate shortly after they came to office. Sadly politics doesn't really change much over the decades.

[heyrick]

Unless solution found, patients must be allowed to opt out in

There, FTFY.

[Mythical Ham-Lunch]

"This data includes the number of beds in a hospital, the size of waiting lists for elective care services, or the availability of medical supplies."

Okay, so the only justification they can provide is to optimize the finite amount of medical care that the system can provide. Lord forbid they spend the 450 million on, uh, beds, and salaries, and bandages!

[Anonymous Coward]

The real scam is just the eternal, unkillable idea, that if we just integrated all the data, this time - this time - it will work, this time we will have huge cost savings, this time some computers will make sick people require less doctors and nurses, this time drug companies won't be jacking up the prices of mature products 5x.

The fact is, even if it was implemented by fairies riding unicorns, it would actually deliver bugger all actual benefit.

[Anonymous Coward]

Ho-Hum here we go again !!!

I have previously 'opted-out' ... this was then deemed no longer valid as the NHS org requesting the 'opt-out' was dissolved.

I will 'opt-out' again by whatever means necessary !!!

The Govt/Palintir will no doubt try to find a 'loophole' to make my information less than private again.

How long can this saga go on and how much money is being wasted to follow this 'idea'.

Surely, the NHS can share this data in a more secure way without needing to involve a foreign Corp who have no regard for privacy.

:)

[Felonmarmer]

Re: Ho-Hum here we go again !!!

I also opted-out. Presumably so many others also did that they decided to re-write the legislation so you didn't get the option and your previous opt-out didn't count.

"NHS England has received advice from lawyers saying key aspects of its controversial Federated Data Platform (FDP) lack a legal basis, meaning that unless a solution is found, it must allow citizens to opt out of sharing their data."

A solution eh? Looking to write a complicated bit of legalise to obfuscate the means to apply your rights to privacy more like.

[Anonymous Coward]

PET

“privacy-enhancing technology (PET), to be provided by IQVIA – lacked a legal footing to proceed.”

It’s nice that for this awful idea, that’s lingered like a bad smell for years, they used the French word for a fart (pet). A project that has produced a lot of hot air and denials from politicians.

[Paul 87]

It's so frustrating

The FDP is needed, and a lot of structure in the way it's being done makes sense. But the huge sticking point is constantly wanting to do more with the data other than provide patient care.

I don't get why the NHS England keeps thinking it's necesscary?

[SundogUK]

NHS civil servants wanting to jump ship and go and work for the providers for much more money.

[Guy de Loimbard]

LLD and HLD review?

There's a lot of noise about opt-in, opt-out, consent, no consent etc.

I've not seen any references to designs, Functional Requirements, Non Functional Requirements, Concepts, schemas, storyboards, data flow diagrams and add whatever else should be available for review and scrutinising.

As other poster have already alluded to, handing this over to a 3rd party to design, build, manage, is not how you start a project with this level of gravitas.

Palantir and others have not got a track record of being open with what they do with data.

Seriously couldn't have chosen a worse partner to kick this off!

The mind boggles, but we've got quango's and politicians involved, what do we expect? Apart from a level of disregard for the plebs?

[JohnMurray]

ooopppssss

https://x.com/Resist_05/status/1831834796676542861

[Anonymous Coward]

Re: ooopppssss

Just because it's on the internet, doesn't mean it's real! Just saying.

One author and his views aren't the whole picture.

[Screwed]

Currently, I cannot see my own records (beyond a few fragments - for example, no test results, no notes, no letters). While I can request them, sometimes it is hard to even identify who holds them in order to do so.

It feels totally incredible that a considerable portion could be accessible to Palantir but not to me.

Currently, even public information can take a long time to work its way through the systems. The NHS' dm+d database might hold information about medicines, but a new medicines can take at least weeks, quite possibly months, to appear on GP systems so that it can be prescribed. And, in reverse, medicines which have been discontinued and cannot in reality be prescribed/dispensed still appear for a months and years.

This is the sort of information which should be kept in the UK. What if we fall out with the USA? What if the USA law gets rid of any protection we might think we have for our data?

[MonkeyJuice]

> What if the USA law gets rid of any protection we might think we have for our data?

We think the USA has any data protection laws now?

[I could be a dog really]

No, because we already know that they don't !

[Jellied Eel]

Currently, I cannot see my own records (beyond a few fragments - for example, no test results, no notes, no letters). While I can request them, sometimes it is hard to even identify who holds them in order to do so.

It feels totally incredible that a considerable portion could be accessible to Palantir but not to me.

Well, we are the product.

So I'm due an appointment at the hospital. They're supposed to send me a letter confirming the appointment and some information. That letter hasn't arrived. So I figured I'd log on to my NHS account. But something wonderful has happened. Now, to log in to my account I apparently need to photograph a photo ID and take a selfie to confirm my identity. Why this is I'm not entirely sure because it used to just work. I guess selling that data for facial recognition or 'AI' training will make someone a bit of money. Next up I guess the login will require a fresh selfie, because why not? Which I guess could provide some useful medical data, like you look pissed off at having to jump through hoops, so the NHS has referred you for anger management counselling.

[Tubz]

NHS like most government depts just don't understand or want to understand people's concerns, far too many times big brother and it's drive for big data has caused harm or distress. We don't mind giving up our data, especially for the NHS, if it remains between the NHS and the patient, no third party data mining without consent. I bet for example if given the option, we would all allow a cancer researcher to access data if it helped find a cure, but hold back on big Pharm using our data to boost profits, especially for a USA company, they have bad track record for privacy, playing fast and loose with rules and thinking they above laws and go crying to US Gov for protection when caught !!

[Anonymous Coward]

> We don't mind giving up our data, especially for the NHS, if it remains between the NHS and the patient, no third party data mining without consent.

Speak for yourself.

For starters the NHS is not actually a single entity, there's NHS England, NHS Wales, NHS Scotland, and HSC NI.

Next off, your local GP Practice is typically a Partnership (i.e. a commercial organisation) contracted by the local "NHS" to provide services (GMS Contract), likewise your Dentist (GDS Contract) and your Optician (GOS Contract). Additionally, both before COVID and especially since then, some services (i.e. minor surgery) may be contracted out to private clinics/hospitals (again commercial orgs). Then there's Independent Hospices (Charities) who interact with "the NHS"...

So your personal data is highly likely to already been passed to (commercial, independent sector, and charity organisations) third parties.

What I personally *do* mind is "giving up" my data to the "NHS" where the purpose(s) that it is "given up for" and the organisations that it is "given up to" are likely likely to change/expand (both in terms of the purposes it is used for and the orgs that will have access to it) over time without adequate public notification.

A realistic example that I'm intimately familiar with: the Northern Ireland Electronic Care Record (NIECR) - launched in 2013 with "some" publicity where personal health records would be shared between all NI Hospital Trusts, all NI GP Practices, and a handful of other organisations (so approx 350 orgs in total) *only* for "direct care" purposes. Spin forward to the present day and there are now approx 1,000 organisations involved in the NIECR sharing and the types of "direct care" uses have greatly expanded (they also seem to have considered on several occasions using the data for research and other purposes).

Were the general public notified about the various phases of expansion of the NIECR's functionality and orgs involved since its launch in 2013? Short answer: no!

In summary, once your health data is shared, especially into a "central store" (such as the NIECR system), then it's more or less impossible for it to be unshared. Your GP Practice may be the Data Controller for your health records (unless you live in Scotland where it was changed several years ago so that your GP Practice *and* the local Health Authority/Trust are Joint Data Controllers) that they hold but once they share those health records with other parts of the "NHS" they then seem powerless to control what happens to those records.

BTW anywhere I mentioned "GP Practice" above I mean "the GP Practice's contract holder" as a GP Practice is effectively just a "trading name" where a Partnership (or in some cases a Limited Company) is the legal entity that signed the GMS Contract with "the NHS", is the Data Controller for the practice's health records, and actually runs the Practice etc.

> especially for a USA company, they have bad track record for privacy, playing fast and loose with rules and thinking they above laws

And you think the "NHS" is any different? What about the row over NHS England trying to push ahead wih GPGDR as an example: https://www.theregister.com/2021/05/13/nhs_data_grab

In the case of the NIECR I have found evidence of unlawful actions by HSC NI organisations on an "industrial" scale since 2013 right up to the present day - no Data Sharing Agreement signed between the Joint Controllers prior to launch or since, no Data Processing Agreements (or equivalent contracts) in place between the Joint Controllers and "engaged" Data Processors (DPs) for multiple years and then when belatedly DPAs were signed (by DPs only, no evidence that any/all of the Controllers signed) they didn't meet the GDPR *requirements* for DP contracts and so are invalid, despite the NIECR being a "Joint Data Controller" activity its actual decision making has been performed by a NIECR Steering Group consisting only 5 of the Joint Controllers (out of approx 350) plus a couple of orgs who are neither Data Controllers nor DPs (and so cannot lawfully make Data Protection-related decisions), plus one of the Data *Processors* - yupe a DP is involved in making Data Protection related decisions regarding the NIECR - something that a DP *cannot* lawfully do.

[Anonymous Coward]

Coding a product to break the law

I suppose you can argue that a system capable of breaking the law is not in itself illegal.

Paying somebody, be it contractor or staffer, to use it for such a purpose does mark you out for the same jail sentence.

But what about aiding and abetting the crime by taking money to develop said shit with exactly that purpose in mind?

[Anonymous Coward]

Sign me up for the opt out already!

[Anonymous Coward]

Business As Usual......

https://www.theguardian.com/society/2023/may/27/nhs-data-breach-trusts-shared-patient-details-with-facebook-meta-without-consent

https://www.theguardian.com/uk-news/2018/sep/13/gchq-data-collection-violated-human-rights-strasbourg-court-rules

https://www.theguardian.com/technology/2017/jul/03/google-deepmind-16m-patient-royal-free-deal-data-protection-act

And in item #3, the Royal Free Trust handed over the medical records of 1.6 million citizens to Google/DeepMind .... and not one citizen provided consent!!

GDPR I hear you say!! Absolutely not!!! No enforcement, no follow up, no fines!!!

And here we are again.....seven years later......and ALL MEDICAL RECORDS will just be handed over to Palantir!!!

GDPR was (and is) a joke.....another piece of flim-flam from Westminster......"We politicians are doing something!"......

Really?? Really??

[Inkey]

Newspeak?

It's mad to think that P.Thiel ponyed up $10 million towards a law suit against Gawker magizine, that put said rag out of business ... for get this invasion of privacy.

" On 15 August 2016, Thiel published an opinion piece in The New York Times in which he argued that his defense of online privacy went beyond Gawker. He highlighted his support for the Intimate Privacy Protection Act and said that athletes and business executives have the right to stay in the closet as long as they want to."

And then called it a win for privacy....

What the actual fuck!

[Anonymous Coward]

Technical note

There's reference in the article to the National Data Opt-out having to be applied if Section 251 support is granted by the Secretary of State.

The Health Research Authority and Department for Health and Social Care are advising the Secretary of State not to apply the National Data Opt-out for some applications.

You can read the list here: https://digital.nhs.uk/services/national-data-opt-out/programmes-to-which-the-national-data-opt-out-should-not-be-applied