Discover and read the best of Twitter Threads about #gpdpr
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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…
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…
First, and possibly most significantly, is @NHSEngland officials' confirmation that its '#FederatedDataPlatform' will incorporate patients across England's #SharedCareRecords:
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…
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*#IntegratedCareSystem explainer here:
kingsfund.org.uk/publications/i…
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”…
gov.uk/government/spe…
gov.uk/government/spe…
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...
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?
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…
...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...
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...
And if @NHSEngland Directs NHSD to use #Palantir, NHSE is *determining the purposes and means of processing* - i.e. it is a #DataController...
Those of you who know my work on #privacy, #identity, and #HumanRights in #data these past 18 years - mostly through @NO2ID & @medConfidential, and in other areas besides - won't be surprised at my involvement in @WEDF_foundation.
This [Thread] is an invitation to join us...
This [Thread] is an invitation to join us...
...and help define what I believe is one of the most crucial discussions of our time; on the #personal, #civil, #political and #planetary consequences of the #world(s) we are building - and the #values we want to underpin them.
I spoke at last year's @WEDF_forum about '#Engineering for #Ethics', just a couple of months before the #GPDPR #GPdataGrab was announced in May.
My talk was an attempt to reflect on and draw lessons from my years of campaigning and work around #data...
My talk was an attempt to reflect on and draw lessons from my years of campaigning and work around #data...
Bad enough that @SensyneHealth has cost NHS Trusts nearly ÂŁ15 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…
medconfidential.org/wp-content/upl…
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...
I see #NHSEx has published the slides from its @HDR_UK “Data Access & Discovery” event, charmingly subtitled “A Forest Through the TREs” - on YouTube, if you want to listen:
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*I thought the phrase was “cannot see the forest for the TREs”, but hey...
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*I thought the phrase was “cannot see the forest for the TREs”, but hey...
Let’s take a look:
hdruk.ac.uk/wp-content/upl…
One reason we use the category term #TRE to refer to Trusted Research (or any other use) Environments that meet the #FiveSafes is that everyone wants to call their own TRE something different, so no-one really knows what they mean...
hdruk.ac.uk/wp-content/upl…
One reason we use the category term #TRE to refer to Trusted Research (or any other use) Environments that meet the #FiveSafes is that everyone wants to call their own TRE something different, so no-one really knows what they mean...
Call yours what you like (e.g. for @ONS it's their Secure Research Service) but if it only does four #Safes, or three Safes - and if it isn’t also #consensual and fully #transparent - then it's not a #trustworthy TRE...
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...
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...
"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…
"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 #GPDPR #GPdata upload will still be going ahead, but it will no longer be starting on 1 September 2021 - the programme will have to meet 3 (or 4) #tests first instead:
digital.nhs.uk/news-and-event…
digital.nhs.uk/news-and-event…
We'll let you do the diff between the "criteria" laid out in the announcement on @NHSDigital website and the "key areas of work" listed in the letter to GPs from @Jochurchill4 this afternoon:
file-eu.clickdimensions.com/hscicgovuk-amn…
file-eu.clickdimensions.com/hscicgovuk-amn…
Which will all make the oral evidence session in front of @CommonsHealth Committee tomorrow morning quite interesting...
committees.parliament.uk/event/5286/for…
See you there!
committees.parliament.uk/event/5286/for…
See you there!
It really feels like we're in the grip of #NHSdataFEVER...
What's going on?
In last few weeks:
#GPDPR - a huge change in how data that your GP saves in your personal GP record gets shared with the Government. The #DPIA (Data Privacy Impact Assessment) still awaited
What's going on?
In last few weeks:
#GPDPR - a huge change in how data that your GP saves in your personal GP record gets shared with the Government. The #DPIA (Data Privacy Impact Assessment) still awaited
#TIGRR - a bonkers, breathless AI-centric libertarian wish-list of data deregulation including abolition of some Articles from our own #GDPR laws (NOT EU law, it's UK law)
Tomorrow there will be a new NHS Data Strategy - which conflates many different uses of data to try to send a ALL DATA GOOD MOAR PLEASE message without any real clarity of thought.
I certainly don't disagree with @AdaLovelaceInst's five messages...
adalovelaceinstitute.org/blog/distrust-…
...but a few points of clarification:
1) The #NationalDataOptOut, while it was (cack-handedly) introduced alongside #GDPR in May 2018, had in fact existed since #caredata - when it...
adalovelaceinstitute.org/blog/distrust-…
...but a few points of clarification:
1) The #NationalDataOptOut, while it was (cack-handedly) introduced alongside #GDPR in May 2018, had in fact existed since #caredata - when it...
...was known as a #Type2 opt out - in case you were wondering about the derivation of #Type1s.
2) There was no announced date for the "expiration" of #Type1 opt-outs - certainly NOT "June 2021". There's no mention of this in the #GPDPR #DPN issued on...
nhs-prod.global.ssl.fastly.net/binaries/conte…
2) There was no announced date for the "expiration" of #Type1 opt-outs - certainly NOT "June 2021". There's no mention of this in the #GPDPR #DPN issued on...
nhs-prod.global.ssl.fastly.net/binaries/conte…
...12 May 2021, and one has to wonder who suggested this to the authors. And why. (A subtle attempt to 'rewrite history'?)
3) #caredata did NOT "lead to" #Caldicott2; indeed, Dame Fiona's Review predated the scheme by months - and was instrumental in...
assets.publishing.service.gov.uk/government/upl…
3) #caredata did NOT "lead to" #Caldicott2; indeed, Dame Fiona's Review predated the scheme by months - and was instrumental in...
assets.publishing.service.gov.uk/government/upl…
@NHSEngland today ran a webinar in which it was claimed that the @PalantirTech #Palantir #Foundry data platform used for the COVID-19 Data Store was "a contract awarded in open competition".
This contract had to be obtained by @openDemocracy through legal action.
This contract had to be obtained by @openDemocracy through legal action.
If the contract itself was kept secret, it is hard to see how the contract could have been awarded in "open competition using normal procurement rules"
opendemocracy.net/en/ournhs/weve…
opendemocracy.net/en/ournhs/weve…
When the contract was published it turned out that the original contract cost was ÂŁ1. One pound.
opendemocracy.net/en/ournhs/it-s…
How exactly does an organisation like @NHSEngland think this fits with "normal procurement"?
opendemocracy.net/en/ournhs/it-s…
How exactly does an organisation like @NHSEngland think this fits with "normal procurement"?
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…
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...
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
But not ALL intended uses of #GPDPR *are* trustworthy, as @NHSDigital's own data release registers confirm:
theysolditanyway.com
A '#Mythbusting' mayhem [Thread]:
Last Friday, 4 June, @NHSDigital removed the “Mythbusting social media posts” box from the top of its main #NationalDataOptOut page:
web.archive.org/web/diff/20210… < Web Archive diff showing 3 June vs 5 June
They also removed...
Last Friday, 4 June, @NHSDigital removed the “Mythbusting social media posts” box from the top of its main #NationalDataOptOut page:
web.archive.org/web/diff/20210… < Web Archive diff showing 3 June vs 5 June
They also removed...
...the @NHSDigital call centre phone number and replaced it with text directing people to the #NHSapp. (If they tell us what changed, we’ll change our website too – but they’ve not yet asked.)
In the same time frame, they changed the...
In the same time frame, they changed the...
...“Read NHS Digital's response to the false information about the national data opt-out” link link on:
nhs.uk/your-nhs-data-…
so that instead of going to the “Mythbusting social media posts about the national data opt-out” page...
nhs.uk/your-nhs-data-…
so that instead of going to the “Mythbusting social media posts about the national data opt-out” page...
The Government has instructed your GP to hand over your lifelong medical history – your GP doesn’t have a choice, but YOU DO... until 23rd June.
If you don’t want your family’s #GPdata used & sold to Hancock’s cronies, send/give this letter to your GP:
medconfidential.org/wp-content/upl…
If you don’t want your family’s #GPdata used & sold to Hancock’s cronies, send/give this letter to your GP:
medconfidential.org/wp-content/upl…
While @NHSDigital’s #OptingOut page* says a #Type1 “can only be recorded by your GPpractice” & doesn’t even link to the form, it’s worth noting #GeneralPractice is currently the busiest it’s ever been. Why is @DHSCgovuk putting even more work onto GPs?
* digital.nhs.uk/about-nhs-digi…
* digital.nhs.uk/about-nhs-digi…
