Discover and read the best of Twitter Threads about #GPdata
Most recents (17)
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)...
__
*#IntegratedCareSystem explainer here:
kingsfund.org.uk/publications/i…
__
*#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?
I'm sure well-intentioned @CamCavendish but this piece completely mashes up #datasharing for #DirectCare of a patient and data sharing for #ResearchAndPlanning, and other 'secondary uses'. These are VERY different in legal basis, IT systems, and privacy.
ft.com/content/dc01b3…
ft.com/content/dc01b3…
It's complex and it doesn't make for punchy articles, but it's very important that we are totally clear about the distinction between Direct Care and Planning/Research.
At present, data sharing for Direct Care STILL lags significantly behind data sharing for secondary uses
At present, data sharing for Direct Care STILL lags significantly behind data sharing for secondary uses
Because they are built on totally different technologies, progress towards Research and Planning uses of #GPData doesn't advance the cause for Direct Care one iota.
Which is why it's so important the distinction is made and understood. Conflating the issues is counterproductive.
Which is why it's so important the distinction is made and understood. Conflating the issues is counterproductive.
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:
__
*I thought the phrase was “cannot see the forest for the TREs”, but hey...
__
*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…
...which, despite fine words about "maintaining high standards", is plainly the intent of @DCMS's proposed #DataProtection 'reforms':
assets.publishing.service.gov.uk/government/upl…
...which include the intent to (re)define "#ScientificResearch" 🤔🤔🤔
assets.publishing.service.gov.uk/government/upl…
...which include the intent to (re)define "#ScientificResearch" 🤔🤔🤔
Of course, we understand #TIGRR's "enthusiasm for #digital", its eye on the value of "highly #profitable consumer data", and frustration with the pesky #protections and #safeguards of #UKGDPR...
assets.publishing.service.gov.uk/government/upl…
assets.publishing.service.gov.uk/government/upl…
"#Data: a new direction" - a public consultation by @DCMS on "reforms to the UK’s #DataProtection regime":
gov.uk/government/con…
The consultation ends on 19 Nov 2021, and you can respond by e-mail to [email protected] or online here:
dcms.eu.qualtrics.com/jfe/form/SV_4P…
gov.uk/government/con…
The consultation ends on 19 Nov 2021, and you can respond by e-mail to [email protected] or online here:
dcms.eu.qualtrics.com/jfe/form/SV_4P…
A quick sample of initial reactions...
We're clearly going to be hearing a lot about #LegitimateInterests, as well as #commercial and #public ones. The real question being, how do this Government's interests actually align with YOURS?
We're clearly going to be hearing a lot about #LegitimateInterests, as well as #commercial and #public ones. The real question being, how do this Government's interests actually align with YOURS?
140+ pages on a Friday is a lot to digest, but @lilianedwards' "penumbra of often futile determinedly populist ideas largely not evidence-based" seems entirely consistent with @DCMS's Drunkard's Walk through #data and #ID this past year...
Good to see #motivation in addition to #competence, #honesty & #reliability.
It always bothered me that #sociopaths could pass Onora's three tests of #trustworthiness*; they can be entirely #competent, brutally #honest & (predictably) #reliable but...
_
*ted.com/talks/onora_o_…
It always bothered me that #sociopaths could pass Onora's three tests of #trustworthiness*; they can be entirely #competent, brutally #honest & (predictably) #reliable but...
_
*ted.com/talks/onora_o_…
...I still wouldn't necessarily feel comfortable #trusting them. (The same applies to corporate entities - some possibly even more so.)
@medConfidential's formulation - #consensual, #safe and #transparent - addresses a subtly different problem, which is that NO system will...
@medConfidential's formulation - #consensual, #safe and #transparent - addresses a subtly different problem, which is that NO system will...
...always be 100% #trustworthy, and certainly not 100% #trusted - given #trust is ALWAYS 'in the eye of the beholder', and NEVER a property of a system.
#Governance and #accountability are key, of course. And maybe this time, we'll actually get what is #needed - rather than...
#Governance and #accountability are key, of course. And maybe this time, we'll actually get what is #needed - rather than...
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!
Here's a fun #NINO - the UK's National Insurance Number - [Thread] to start the weekend 👇
Maybe I should do an #NHSnumber one sometime? It's a fascinating story, which (ironically) starts with these...
Maybe I should do an #NHSnumber one sometime? It's a fascinating story, which (ironically) starts with these...
[With thanks to @guy_herbert, @TomSamaki, @PrivacyMatters & others for encouragement!]
Before I start a geeky 'deep dive' on the #NHSnumber, to provide some (personal/professional) context that will hopefully become apparent, I'll just drop these two images here:
Before I start a geeky 'deep dive' on the #NHSnumber, to provide some (personal/professional) context that will hopefully become apparent, I'll just drop these two images here:
So, to begin.
After the Second World War, in a time when we started to think (again) what a #civilised society would be, and when our leaders tried to agree #principles like #UDHR that might prevent the recurrence of genocide, and support #dignity and #HumanRights for all...
After the Second World War, in a time when we started to think (again) what a #civilised society would be, and when our leaders tried to agree #principles like #UDHR that might prevent the recurrence of genocide, and support #dignity and #HumanRights for all...
If @NHSEngland claimed that, NHS England LIED. (Not for the first time...)
The original @PalantirTech contract is here:
cdn-prod.opendemocracy.net/media/document…
And the story behind how it was awarded is here:
thebureauinvestigates.com/stories/2021-0…
#WatermelonCocktails
The original @PalantirTech contract is here:
cdn-prod.opendemocracy.net/media/document…
And the story behind how it was awarded is here:
thebureauinvestigates.com/stories/2021-0…
#WatermelonCocktails
If @NHSEngland & @NHSX want to talk about #transparency and proper #process, then why haven't they published the data release register for the #COVIDDataStore from which @PalantirTech and others are fed?
We've been asking for it since March 2020; we reiterated & escalated our...
We've been asking for it since March 2020; we reiterated & escalated our...
..request in writing in June 2020; colleagues at @useMYdata made an identical request in October 2020:
usemydata.org/resources/use%…
and @NHSEngland's Chief Data & Analytics Officer told #CitizensJuries in March, April and May 2021 that she could share the #COVIDDataStore...
usemydata.org/resources/use%…
and @NHSEngland's Chief Data & Analytics Officer told #CitizensJuries in March, April and May 2021 that she could share the #COVIDDataStore...
The man's either lying or he's DANGEROUSLY ignorant / ill-informed.
Hancock can't have missed that Cummings' henchman Ben, who attended SAGE, was the brother of Marc Warner (CEO of Faculty Science Ltd, formerly ASI Data Science Ltd) that built the #dashboards Matty Moo-Moos...
Hancock can't have missed that Cummings' henchman Ben, who attended SAGE, was the brother of Marc Warner (CEO of Faculty Science Ltd, formerly ASI Data Science Ltd) that built the #dashboards Matty Moo-Moos...
...so loves, on top of @PalantirTech's Foundry "#DataPlatform" (remember those words!) that @NHSEngland has contracted for another 2 YEARS, to feed data from NHSE's ever-so-untransparent #DataStore.
But let's push it further - away from the now-defunct @CamAnalytica - in the...
But let's push it further - away from the now-defunct @CamAnalytica - in the...
...direction of the notoriously 👇👇👇 bullshitting:
artificialintelligence-news.com/2019/04/12/bab…
#AI company that also happens to be @MattHancock's GP:
blogs.bmj.com/bmj/2018/12/04…
A company Hancock appears to be pushing his @NHSX minions to use to replace #NHS111 triage...
pulsetoday.co.uk/news/technolog…
artificialintelligence-news.com/2019/04/12/bab…
#AI company that also happens to be @MattHancock's GP:
blogs.bmj.com/bmj/2018/12/04…
A company Hancock appears to be pushing his @NHSX minions to use to replace #NHS111 triage...
pulsetoday.co.uk/news/technolog…
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 GPs in England to hand over your lifelong medical history.
Your GP may not have a choice, BUT YOU DO... until 23rd June.
If you don’t want your family’s sensitive data sucked up by Hancock’s sneaky #GPdata grab, send or give this letter to your GP:
Your GP may not have a choice, BUT YOU DO... until 23rd June.
If you don’t want your family’s sensitive data sucked up by Hancock’s sneaky #GPdata grab, send or give this letter to your GP:
Here’s the link to a printable PDF version of the letter:
medconfidential.org/wp-content/upl…
And here’s an editable MS Word (.docx) version:
medconfidential.org/wp-content/upl…
And if you need further instructions, visit our straightforward ‘How to opt out’ page:
medconfidential.org/how-to-opt-out/
medconfidential.org/wp-content/upl…
And here’s an editable MS Word (.docx) version:
medconfidential.org/wp-content/upl…
And if you need further instructions, visit our straightforward ‘How to opt out’ page:
medconfidential.org/how-to-opt-out/
This really is happening 👇 but the Government is keeping quiet; @MattHancock doesn’t want you to know.
So please tell your family and friends.
They may not know this is about to happen, but if they don’t opt out before their #GPdata is uploaded IT WILL NEVER BE DELETED.
So please tell your family and friends.
They may not know this is about to happen, but if they don’t opt out before their #GPdata is uploaded IT WILL NEVER BE DELETED.
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…
I'm afraid not. For the 2021 #GPdata grab, to prevent your entire GP history being copied by @NHSDigital you must ask your GP to add a 'Type 1' opt-out to your GP record.
The official form to do that is here:
nhs-prod.global.ssl.fastly.net/binaries/conte…
Or you can use ours:
medconfidential.org/how-to-opt-out/
The official form to do that is here:
nhs-prod.global.ssl.fastly.net/binaries/conte…
Or you can use ours:
medconfidential.org/how-to-opt-out/
The GP Privacy Notice* issued by @NHSDigital is on first glance a bit confusing, suggesting you can do a #Type1 "or" a #NationalDataOptOut - but (as the Notice goes on to explain) the latter WILL NOT STOP your #GPdata from being taken...
__
*digital.nhs.uk/data-and-infor…
__
*digital.nhs.uk/data-and-infor…
...and if you do not opt out using a #Type1 to your GP before data is first extracted (from 1 July 2021*) then your entire GP history will be taken on first upload - and will NEVER be deleted!
__
*Hence the 23 June 2021 deadline, so your opt-out form(s) can be processed in time.
__
*Hence the 23 June 2021 deadline, so your opt-out form(s) can be processed in time.
