Discover and read the best of Twitter Threads about #nationaldataoptout
Most recents (8)
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?
@LisaMWatki That @ukfuturehealth somewhat 'buries the lede' on its intention to construct a giant £212 million 👇 #DNA / #genomic database in its patient literature is somewhat concerning...
find-tender.service.gov.uk/Notice/019818-…
find-tender.service.gov.uk/Notice/019818-…
@LisaMWatki @ukfuturehealth ...not to mention the £62.5 million+ they'll be spending taking people's #bloods, etc.:
find-tender.service.gov.uk/Notice/005068-…
find-tender.service.gov.uk/Notice/005068-…
@LisaMWatki @ukfuturehealth Of course, #OurFutureHealth had to get its money from somewhere.
I'll give you one guess as to where...
ourfuturehealth.org.uk/partners/#htoc…
I'll give you one guess as to where...
ourfuturehealth.org.uk/partners/#htoc…
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…
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...
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…
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...
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!
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*Hence the 23 June 2021 deadline, so your opt-out form(s) can be processed in time.
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*Hence the 23 June 2021 deadline, so your opt-out form(s) can be processed in time.
