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
But we feel characterising #GPDPR as “@MattHancock’s sneaky #GPdata grab” is entirely #justified:

1) The programme is #Directed by the Secretary of State;

2) It has been rushed out after supposedly “three years” of development, giving GPs and patients just 6-7 weeks’ notice...
...of the extraction of the GP history (not the full record, but everything medically meaningful) of every man, woman & child currently registered with a GP in England;

3) It *is* #GPdata, and the first upload will extract every patient's lifelong GP history to date, with...
...daily updates thereafter.

4) #GPDPR has been appallingly and confusingly (mis)communicated by @NHSDigital and the Government - which remained almost entirely silent about the scheme, until announcing its delay...
Noting also the #GPdata extracted will NOT be anonymous; it will be reversibly #pseudonymised.

And, quite aside from legitimate #research uses, copies of the data WILL be disseminated for payment (“sold”) to third parties. Here’s this year’s price list:

digital.nhs.uk/services/data-…
It is for others to determine the extent of #UKHRA's "leadership" on #TREs and the #FiveSafes.

We would just note @medConfidential recommended @ONS's #SafeSetting to Parliament in 2014 during the #caredata debacle, 3 years before @HDR_UK was founded & 5 years before #UKHDRA...
Your paragraph 5 is, however, actively #misleading in that it fails to even mention the #Type1 opt-out which will stop patients' #GPdata being #extracted by @NHSDigital - referring ONLY to the #NationalDataOptOut, which does not.

Please correct this.

medconfidential.org/how-to-opt-out/
Picking up on #TREs, which we've been talking to @HDR_UK about, amongst other things.

Of course we know how to do the proper (#FiveSafes #TRE) #safe part of #consensual, #safe and #transparent - and have done for a *long* time - but that not only has to be DONE, it has to be...
...SEEN TO BE DONE before the #GPdata programme can even look at doing "better communications" and #consent.

Else it’ll just be @MattHancock's 🤞 promise (and his replacement's?) that things'll be safer tomorrow…

• • •

Missing some Tweet in this thread? You can try to force a refresh
 

Keep Current with Phil Booth

Phil Booth Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @EinsteinsAttic

11 Jun
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... Image
…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… Image
...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… Image
Read 4 tweets
10 Jun
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... Image
...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... Image
...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… Image
Read 6 tweets
6 Jun
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
27 May
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
15 May
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...

__
*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.
Read 4 tweets
15 May
While I appreciate it won't have been everywhere, in my town GP practices have been doing flu jabs then COVID jabs round the clock *for months* while offering phone and F2F appointments, safely, when needed.

WTF does @NHSEngland think has been going on?

england.nhs.uk/wp-content/upl…
Powerful response from Local Medical Committee to @NHSEngland's tone-deaf letter:



Blaming GPs for *its own policies*
england.nhs.uk/gp/digital-fir…

which it clearly intends to pursue
gponline.com/nhs-england-pl…

...is the height of #hypocrisy.

But nothing new.
Also this 👇 and rest of [Thread]:



Too many forget that @NHSEngland is NOT 'the NHS in England' but rather the #NHS #CommissioningBoard - as the letter about its renaming in 2013 made crystal clear:

assets.publishing.service.gov.uk/government/upl… Image
Read 5 tweets

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!

Follow Us on Twitter!

:(