Top Tweets for #caredotdata
...so by "incorporating" your Shared Care Record into its #FDP, @NHSEngland is once again attempting a #DataGrab including your #GPhistory - this time hiding behind the #ICSs, instead of @NHSDigital as in 2021's #GPDPR or #caredotdata, as in 2014:
https://t.co/eqj97Aq7A6
...caused by the #CoverUp, like undermining #trust across the board, was in some ways even worse than what they tried to hide.
Does any of this sound familiar to #caredotdata veterans? (Or at least, those who learned something?)
..we HAVE taken legal advice on that.
#NHSTrusts don't just get to #sell copies of their patients' data - for shares in dodgy 'AI' companies, or anything else.
In case they've not been paying attention (cf. #caredotdata, #GPDPR) this is precisely what destroys #trust
🤦♂️🤦♂️🤦♂️
#TruDat
So why are @DHSCgovuk / @NHSEngland trying to replicate - with #ICS '#SharedCareRecords'* - what the architect of #caredotdata (also) stuffed up when he went to Australia?
Doesn't seem very #strategic...
__
*https://t.co/vll3ubJ5Oa
Much for the U.K. to learn about the utility of the shared record. If it’s not useful - it’s not used.
@infogovdude Hi Bilal, I'm afraid that doesn't ring any bells for me. Do you have an idea how many years ago this was, even roughly? Could it have come from a speech in the Commons during #caredotdata, for example? (I know David Davis spoke about this issue then; maybe another MP did too?)
...and, a bit like @NHSEngland did after #caredotdata in 2014*, they've created some "advisory groups".
You can read the #TermsOfReference and published 'Action notes' for the '#GPData #Check and #Challenge Advisory Group' here:
https://t.co/STHV6g6sju
__
*Check who's missing:
“Major projects have lowered public buy-in”. No shit!
Whose brilliant idea was it that the body (in some cases, the people) who pushed #caredotdata & #GPDPR - not to mention long-held #DataLake/#TargetArchitecture* ambitions - gets to define the rules?
*https://t.co/S4zsqk4OAC
...which are all eminently #engineerable, given the political will, and resourcing.
So why didn't @NHSEngland learn from #caredotdata, and will they *actually* learn from #GPDPR and this Review? After all, it's not like they haven't had many of the 'blueprints' for years...
#Codelists aren't like #catalogues, and neither of them are like #SQLqueries. One reason why its all the more important we get each of the basic #BuildingBlocks right, and start right now. Eight years after #caredotdata, we'd made very little progress; where will we be in 8 more?
On #caredotdata, for example, it was not just that the programme was appallingly and #misleadingly #miscommunicated; the opt-outs were made deliberately confusing and difficult - something that *still* hadn't been addressed by the time #GPDPR was announced.
The more difficult...
Clear sense on #TREs too (recommendation 3) 👇
If 'any man and his dog' is allowed to build a TRE, we'll simply end up with the farcical proliferation of so-called 'safe havens' that existed pre-#caredotdata.
A small number of *mutually-accredited* TREs keeps EVERYONE honest...
Oh joy. "Thorny" is somewhat of an understatement! For all of the familiar hand-waving on potential 'benefits', this could all too easily turn out to be the EU's #caredotdata...
More info on the #EUHealthDataSpace here:
https://t.co/63dMRsC8av
The Health Data Space will address the thorny issue of re-using health data for ‘secondary use’ which, for the Commission, can significantly boost the innovative field of personalised medicines. @BertuzLuca and I have taken an in-depth look at the proposal
https://t.co/C24vMawwLL
Worth noting that by an equivalent point with #caredotdata in 2014, the #CareDataAdvisoryGroup had not only published its Terms of Reference but the minutes of its first FOUR meetings:
https://t.co/3HxGQjXTHf
#GPDPR #TransparencyFail 🤦♂️🤬
“We find ourselves in a difficult position of being part of a panel of which the public is unaware & about which nothing is published” – Part of our letter to @NHSDigital @NHSX continuing to push for transparency around #GPDPR - https://t.co/yaS5tVAdQE @NDGoffice @medConfidential
It is #caredotdata all over again. If the #NHS is going to keep making these mistakes you wish they would at least make different mistakes.
‘This is the biggest data grab in the history of the health service’ says @guardian I’m all for sharing data but let’s not sneak it through without proper Comms & cause irreversible damage to trust #privacy #healthdata #nhs https://t.co/WarNMUhkLr
Did @MattHancock's advisory group think this was a good idea? Where are the #IG terms? @bengoldacre @parkermoss Beginnings of #CareDotData mark 2? @jtweeterson @HPIAndyCowper @Masey_uk
Matt Hancock is to announce a partnership between the NHS and Amazon that will let patients “ask Alexa” for medical advice https://t.co/m4BGQRYP44
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