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… I will unite our country, not with words, but with action.
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...
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?

Read 31 tweets
@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-… II.1.4) Short description  The scope of the procurement is r
@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-… A service provider(s) will be responsible for elements of iniv. Responsible for legal and compliance issues related to p
@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… Our Future Health has announced £150 million funding from l
Read 10 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
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
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
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
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

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