Discover and read the best of Twitter Threads about #pseudonymised

Most recents (10)

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...

theguardian.com/society/2022/n… 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)...

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*#IntegratedCareSystem explainer here:

kingsfund.org.uk/publications/i… Map 1: The 42 integrated ca...
Read 21 tweets
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].

nhs-prod.global.ssl.fastly.net/binaries/conte…
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. "...in 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
Prompted by @LynnFOI, a [Thread] on the #NHSTrusts that cut #commercial deals to #copy their patients' data* to (formerly) Lord Drayson's now-delisted "AI" company, @SensyneHealth

First up, it's...

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*More info on the nature of the data they sold here:

Lord Drayson and his wife have a 22.8 per cent stake in the
1) @OUHospitals (Oxford University Hospitals) took £5 million in @SensyneHealth shares for its patients' data in July 2017:

sensynehealth.com/newsroom/drays…

It LOST £9.2 million on the value of those shares, HAS copied patients' data, and HAS NOT terminated its contract with #Sensyne...
2) @nhsswft (South Warwickshire Foundation Trust) received £5 million in @SensyneHealth shares, in a deal cut in 2018:

sensynehealth.com/newsroom/sensy…

The Trust HAS NOT said how much value it lost; it HAS copied #identifiable* patient data; and it HAS NOT terminated its contract...

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Read 18 tweets
Bad enough that @SensyneHealth has cost NHS Trusts nearly £15 million - Lord Drayson's claim to be 'giving something back to the NHS' lies in tatters - but what people should *really* be asking about is the MILLIONS of #patients' data the company claims to be processing...
...because, as our letter to the Trusts in April pointed out, at least some of their patients' data that they handed over is #linkable #pseudonymised data - i.e. it is #identifiable, thus #PersonalData in UK law:

medconfidential.org/wp-content/upl… Pseudonymised Data  On the matter of the data itself, whethe
So while @SensyneHealth's #shareholders might want to check the company's claims about the #amount of NHS patients' data it actually has, those Trusts that HAVE passed #identifiable data to #Sensyne should terminate their agreements asap - and demand certified #deletion, too...
Read 7 tweets
Finally, the #GoldacreReview is published! (During Parliamentary Easter holidays, mid-ping-pong on the #HealthAndCareBill...)

It's 221 pages - each PDF page is a double page spread - so this could be a lo-o-o-ong [Thread].

Here goes...
First point to note, in the Terms of Reference (p5), is that this is about "access to #NHSdata by #researchers, #commissioners, and #innovators" - i.e. #Planning and #CommercialReUse - so it is directly relevant to the operation of millions of people's #NationalDataOptOuts... Terms of reference for the review  1. How do we facilitate a
"185 wide-ranging recommendations for us to explore", says @sajidjavid (p6). Gulp! Time for some coffee...

"systems that ensure #underrepresented groups are well represented" may (partly) refer to this "landmark review", which got off to a slow start:

gov.uk/government/new… The far-reaching independent review into potential ethnic bi
Read 159 tweets
Hmm. Are you 100% certain about that, Dom? @NHSEngland's #PrivacyNotice for the #COVID19DataStore clearly states otherwise 👇

england.nhs.uk/contact-us/pri…

The #dashboards may(?) only show aggregate numbers, but those numbers were generated from individual-level data...
…i.e. from #PersonalData, as is also clearly stated in the #DPIA 👇

england.nhs.uk/wp-content/upl…

Indeed, it says the strategic dashboard "will display ... record level pseudonymised data” and (as a data expert) you will of course know that #pseudonymised data is #personal data…
...and has been *in law*, as well as in practice, since at least May 2018.

@ICOnews published some helpful (draft) guidance just last month that can point you in the right direction if there's any confusion:

ico.org.uk/media/about-th…
Read 4 tweets
Hi, @BHFDataScience! Please could you point me to a copy of your letter that is reported here:

theguardian.com/science/2021/j…

I've checked your website, but I can't seem to find a copy:

hdruk.ac.uk/helping-with-h…
Ah, no worries - I see it now. You tweeted a link to it, and I see it is on @HDR_UK's website:

hdruk.ac.uk/news/nhs-digit…

On reading your letter, @medConfidential would heartily agree with paragraphs 1, 3 and 5...
On paragraph 3, we very much agree that #trustworthy use of patient data for #ethically-approved #research is good.

But not ALL intended uses of #GPDPR *are* trustworthy, as @NHSDigital's own data release registers confirm:

theysolditanyway.com
Read 11 tweets
A [Thread] on @CDEIUK's "Addressing trust in public sector data use" report:

gov.uk/government/pub…

(Likely in bursts)

1/x
Good point on #evaluation. So why aren't ALL public sector & Government contractors under #FOI, and #required to provide such data? Hiding behind 'commercial confidentiality' shouldn't be allowed.

"Sharing" is a two-way activity!

/2 Image
While it may be implicit, any 'sharing' of #PersonalData must above all be #lawful - which means #necessary (for a particular, specified #purpose) and #proportionate. Individual #consent may provide one lawful basis; the notion of "public consent" is rather more hazy!

/3 Image
Read 12 tweets
Fascinating piece by @rowlsmanthorpe on the beleaguered #nhsxCovid19app:
news.sky.com/story/coronavi…

Insiders pretty much nail the two core problems: firstly, lack of clarity on what the app was supposed to be & do, and secondly 👇 Image
To those attuned to internal cultures, there are some amusing echoes of @ukhomeoffice: @MattHancock's "4%" tirade, reminiscent of @sajidjavid's insistence that @Apple should change iOS to suit HO's #SettledStatus scheme, and some wicked interorganisational chess 👇 Image
The only bit that spoils the piece for me is this 👇

If you've been following its development and read the contracts & DPIA, you'll know @NHSEngland (not @NHSX) is controller of the #COVID19 #DataStore, which sits on @Microsoft @Azure.

@PalantirTech doesn't "run" anything... Image
Read 7 tweets
So, @MattHancock, rather than dribbling out info months after the fact will you please get @DHSCgovuk & @NHSEngland to publish a list of ALL #COVID-related projects, related contracts & data access RIGHT NOW.
Also, it doesn't bode well that you're misrepresenting genuine research!

@OpenSafely doesn't work on the #DataStore, it sits on #TPP's servers - which you'd know if you had the first clue or bothered to read its homepage: opensafely.org Image
And BTW, no-one's buying your transparent shilling for @faculty_ai:



Its "new cutting-edge predictive technology" was no help in the first wave - 'cos no overwhelm - but you gotta announce SOMETHING now, to justify paying Marc Warner & co. even more...
Read 4 tweets

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