Discover and read the best of Twitter Threads about #caredata

Most recents (4)

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
IMPORTANT JOB! 👇

…blicappointments.cabinetoffice.gov.uk/appointment/th…

Having abolished #NIGB in 2012, following #caredata & #IIGOP's 1st report in 2014, the Gov't was forced to appoint a #NDG; it took 4 more YEARS to make the National Data Guardian for Health & (only Adult) Social Care a statutory role...
... something for which @medConfidential had advocated since the #CareAct2014: medconfidential.org/wp-content/upl… and subsequently, e.g. medconfidential.org/wp-content/upl… and medconfidential.org/wp-content/upl…, until @Jochurchill4's Bill was passed.

So, while we aren't part of the formal process, we do take...
...a great & close interest in the role & Office of #NDG, and look forward to working with whoever is appointed to follow Dame Fiona, in helping ensure EVERY use of patients' & service users' data is #consensual, #safe & #transparent.

Here's the ad again: …blicappointments.cabinetoffice.gov.uk/appointment/th…
Read 3 tweets

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