Discover and read the best of Twitter Threads about #GPDPR

Most recents (9)

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
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
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
#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.
Read 8 tweets
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... Image
...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… Image
...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… Image
Read 5 tweets
@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.
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…
When the contract was published it turned out that the original contract cost was £1. One pound.

opendemocracy.net/en/ournhs/it-s…

How exactly does an organisation like @NHSEngland think this fits with "normal procurement"?
Read 20 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 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

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