Discover and read the best of Twitter Threads about #GPData

Most recents (15)

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…
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
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.
Read 18 tweets
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...
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...
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...
Read 24 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
Welcome back, George.

Now, about that "race-to-the-bottom" slashing of #data #protections...
...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" 🤔🤔🤔
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…
Read 6 tweets
"#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 DataReformConsultation@dcms.gov.uk or online here:

dcms.eu.qualtrics.com/jfe/form/SV_4P… Image
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?

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...

Read 28 tweets
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_…
...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...
...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...
Read 6 tweets
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…
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…
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!
Read 6 tweets
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...
[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:
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...
Read 32 tweets
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
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...
..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...
Read 6 tweets
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...
...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...
...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…
Read 6 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 '#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...
...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...
...“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...
Read 11 tweets
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:
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/
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.
Read 8 tweets
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…
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…
Decisions aren’t only made by @NHSDigital, of course -but it WILL give your data to others.

Like #CPRD, which gives it to companies to #identify specific patients’ #records; and #PHE, which gave #cancer patients’ data to a “causes of cancer” study run by a #tobacco company...
Read 6 tweets
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 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...

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*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!

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*Hence the 23 June 2021 deadline, so your opt-out form(s) can be processed in time.
Read 4 tweets

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