Phil Booth Profile picture
Nov 13, 2022 21 tweets 27 min read Twitter logo Read on Twitter
This headline 👇 will be no surprise to anyone who's been following @NHSEngland's plans (and actions) for a while.

But @JonUngoedThomas's article reveals some crucial details about what's intended for your #NHS #HealthRecords that are worth unpacking...… Controversial £360m NHS Eng...
First, and possibly most significantly, is @NHSEngland officials' confirmation that its '#FederatedDataPlatform' will incorporate patients across England's #SharedCareRecords: Health officials confirmed ...
Why is this so important? Because #SharedCareRecords - which every new #ICS* is supposed to have - include your #GPdata, which @NHSEngland has been trying to get hold of for years (most recently last summer)...

*#IntegratedCareSystem explainer here:… Map 1: The 42 integrated ca...
...and because people around the country - including my colleague Sam 👇- have been told and are being told unambiguously that their #ICS "Shared #Care Record" (#ShCR) will ONLY be used for delivering their #DirectCare:

Is my data secure?  Your da...
Where this is true, such #DirectCare uses would be #lawful BUT - as per existing #SummaryCareRecords (#SuCR) - patients have a right to #OptOut or to restrict #sharing of their medical information, for personal safety, confidentiality or any other reason:…
But @NHSEngland's Federated Data Platform is NOT primarily for the delivery of individual #DirectCare - it is largely intended for 'secondary uses' such as #Planning (covering a host of uses), #PopulationHealthManagement*, and #Research...

*… Population Health Managemen... by "incorporating" your Shared Care Record into its #FDP, @NHSEngland is once again attempting a #DataGrab including your #GPhistory - this time hiding behind the #ICSs, instead of @NHSDigital as in 2021's #GPDPR or #caredotdata, as in 2014:… ImageImage
What's even worse is that, though this has been @NHSEngland's intention FOR YEARS, it put out guidance* that made NO MENTION of these secondary uses - so the #ICSs and their precursors have been #misleading their patients all this time...

*… Information Governance Fram...
The basic principle the original #NationalDataGuardian, Dame Fiona Caldicott, established was "NO #SURPRISES" for patients.

And yet each time, @NHSEngland - which runs no hospitals and cares for no patients - tries sneaking in another #DataGrab without being up front & #honest. No surprises  The National ...
The second crucial detail is the nature of the information @NHSEngland will siphon into its #FDP 👇 and its legal basis for "wider use" of it.

When used for your #DirectCare, your medical details are fully #identified - they HAVE to be, so medics know who they are treating... The records contain a wide ...
...and, in the main part, #DirectCare is done with what is called "#implied #consent", though you still have #choices about your data being #shared - as with the #SummaryCareRecord (see above) - and your #informed #consent must be sought for certain treatments, e.g. operations.
What @NHSEngland CANNOT lawfully do is rely on that #ImpliedConsent for #DirectCare for the *other* things it wants to do with your NHS health data.

However, instead of telling you what it intends to do, and seeking your #consent (opt in) or respecting your #dissent (opt out)...
...@NHSEngland is trying a bunch of other ways to get what it wants.

One is to redefine things that aren't care as 'direct care'; another is to collect data for a particular #DirectCare purpose, but then reuse it for other things - what it calls "collect once, use many times"...
...a phrase that emerged with last year's attempted #GP #DataGrab.

The way @NHSEngland tries justifying such #reuse is worth unpacking, and revolves around precisely what is meant by the technical term "de-identified"... The records contain a wide ...
Though it might sound like it is, data that has been "#deidentified" is NOT #anonymous.

In practice, 'de-identification' means removing SOME of the most obvious #identifiers - like your name, address, date of birth, or NHS number - and/or replacing one or more of them with...
...what's called a #pseudonym - like a handle or alias, but not one you choose - so that your data from different parts of the NHS can be #linked together over time.

(In some situations, where the law permits, pseudonyms can even be 'reversed', so patients can be #reidentified.)
So data treated this way is still #identifiable, not only because YOUR medical details can be #linked - and not, say, yours with someone else's - but also because EVERYONE'S medical history is #unique, and events and combinations of events in it make you #uniquely identifiable...
And this is @NHSEngland's #deception: in effect it's saying that once it has "de-identified" (or #pseudonymised) the data it has collected, it can do what it wants with it because it's no longer 'your data'.

Officials bandy around terms like "confidential patient information"...
...and offer torturously narrow self-serving techno-legalistic explanations, all to distract from the #fact - and the #law 👇 - that both #pseudonymised & #deidentified data at patient level is STILL your #PersonalData.

And so all the rules still apply.… However, pseudonymisation i...
Which as well as ensuring EVERY use of patients' data is #lawful, #fair and #transparent, means #respecting people's #NationalDataOptOuts from #Planning & #Research 👇 AND the promises Ministers made just a year ago, after #GPDPR came off the rails...

...and NOT trying to hide behind a no-longer-statutory 2012 Code of Practice, as @NHSEngland did in its Direction to @NHSDigital - which it is in the process of taking over - to use #Palantir to collect NHS patients' #hospital data just last week:

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More from @EinsteinsAttic

Dec 29, 2022
Nah. This is another puff piece on the #WaitingList pilot, details of which @NHSEngland published - without daring to mention @PalantirTech - over ten months ago...…
To be clear, 30 individual NHS Trusts* are using #Palantir #Foundry to manage elective care waiting lists, not patients' entire medical histories - largely by what Ministers have called "cleansing" the data:

*Though @NHSEngland won't say which ones...
The timing (and placement) of the piece is, however, quite obvious - with the tender for @NHEngland's "#FederatedDataPlatform" imminent.

And the #FDP - whether awarded to #Palantir or otherwise - is most definitely something people will have concerns about, especially given...
Read 5 tweets
Nov 1, 2022
So let’s talk about where things got up to with your #HealthData, before Rishi Sunak started talking about the need to generate trust in Government with “#integrity” and “#accountability”…… I will unite our country, not with words, but with action.
Earlier today we got a bunch of detail out of @NHSDigital’s Board papers and services performance pack - what of that will continue post-#merger?

N.B. The chair of NHS Digital announced today’s meeting would be the last public meeting of the Board...
With the news that the Government is rushing through @NHSEngland’s takeover of the statutory safe haven (@NHSDigital) with about the level of planning that went into the 'fiscal event', where exactly *are* things as the former/new Sec State starts work?

Read 31 tweets
Nov 1, 2022
While the chaos of '#AcceleratedCitizensAccess' to #GPrecords continues to unfold:

...we've come across some perturbing items on the agenda for @NHSDigital's Board meeting this afternoon 👇 which I'll pick up on in this [Thread].…
First, beginning on page 158, are some Directions that @NHSEngland must know will be HIGHLY controversial - given they are telling @NHSDigital to use @PalantirTech's #Foundry to collect *patient level identifiable data* from hospitals... 1 Executive Summary  NHS England are directing NHS Digital t
I'll tweet as I do a read-through, but even these first two paragraphs are incoherent, e.g. " a way that will enable." Enable what?

And if @NHSEngland Directs NHSD to use #Palantir, NHSE is *determining the purposes and means of processing* - i.e. it is a #DataController... Whether you are a controller or processor depends on a numbe
Read 25 tweets
Oct 30, 2022
Hmm. Why would @ukhomeoffice choose to announce this today:…

...making explicit reference to "the findings from the Independent Review of #Prevent, led by William Shawcross", WITHOUT PUBLISHING THE REVIEW?
It's not like publication of the #PreventReview wasn't long overdue *nearly a year ago*...…

From December 2021: Review of Prevent counter-e...
...and yet, despite having been submitted to @pritipatel in April 👇, and #leaked in May 2022:…

...and then #teased in September:… The findings of the report,...
Read 5 tweets
Oct 25, 2022
HT @LisaMWatki for prompting this [Thread] 👇 on the #OurFutureHealth letter/leaflet some of you may be receiving, which appears to omit a few important details...
Those of you with long memories may remember @MattHancock's "5 Million Genomes" announcement back in 2018:…

So now you know who (one of) the "other partners" is... This will help support Matt Hancock’s wider ambition to se
...and of course it will come as no surprise that the prime mover of @ukfuturehealth (on the radio just last week) is none other than the author of the Government's #LifeSciences #IndustrialStrategy*:

…… [left pic]

*… [right pic]
Read 4 tweets

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