Discover and read the best of Twitter Threads about #Type1s

Most recents (3)

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
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
Margaret's blog refers to @NHSDigital's #DataProtectionNotice for the #COVID19 #GPES extract, but somehow omits to mention that people's #Type1 objections (#OptOuts) WILL be upheld: Image
And also that, according to digital.nhs.uk/coronavirus/gp…, actually *enhanced* #InformationGovernance processes - involving both @TheBMA & @rcgp - will be in place for data #access, which "may" include respecting #NDOP on a "case by case basis": ImageImage
Meanwhile, @NHSEngland/@NHSX in their notice to health & care professionals (while notably failing to mention #Type1s...) confirms patients STILL have the right to #OptOut of having a #SummaryCareRecord, and that existing #SCR #OptOuts will be respected:
nhsx.nhs.uk/documents/11/C… Image
Read 6 tweets

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