Discover and read the best of Twitter Threads about #GoldacreReview

Most recents (3)

I'm sure well-intentioned @CamCavendish but this piece completely mashes up #datasharing for #DirectCare of a patient and data sharing for #ResearchAndPlanning, and other 'secondary uses'. These are VERY different in legal basis, IT systems, and privacy.

ft.com/content/dc01b3…
It's complex and it doesn't make for punchy articles, but it's very important that we are totally clear about the distinction between Direct Care and Planning/Research.

At present, data sharing for Direct Care STILL lags significantly behind data sharing for secondary uses
Because they are built on totally different technologies, progress towards Research and Planning uses of #GPData doesn't advance the cause for Direct Care one iota.

Which is why it's so important the distinction is made and understood. Conflating the issues is counterproductive.
Read 18 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
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

Related hashtags

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3.00/month or $30.00/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!