Top Tweets for #CareData2
Children and the #NHSDataGrab / #caredata2 / #GPDPR
NHS Digital is taking everyone's medical records, no matter how young or old you are.
As soon as newborn children are registered at their GP surgery, their data will be uploadable.
Apart from caring about data protection, the other reason I’m extremely angry about Hancock’s sneaky #caredata2 medical data grab is because it could cause people to be suspicious of the need for their (appropriately handled) data to assist vital health research.
1/2
You will ❇️ lose control ❇️ of your GP record once uploaded
So:
Read 📖 think 🤔 decide ✔️ ❌
And do it sharpish
▪️https://t.co/0PZc4yhg6N
▪️https://t.co/Bd1kcAak7N
▪️https://t.co/TGSxO6BgQJ
▪️https://t.co/vatKpWSMvm
#caredata2 #GPDPR #myGPdata
Absolutely agree. The government is hell-bent on making this happen, and many involved want it to for the right reasons, but it's being rushed through in a very underhand way, as usual #caredata2? GPs cannot be expected to explain this; the people in charge barely understand it.
This is complex area as data use is a public good, but it simply must not fall into the wrong hands. Trust is key, there needs to be a stop to this then a proper consultation. GPs do not have time to explain (and what would we say!?) @HelenRSalisbury @bengoldacre @Crimpoffalength
Ok. So @guardian reporting that @ICOnews is doing the DPIA for #CareData2 https://t.co/kSKXXU2dzt
If this is the case it compromises the independence of the Regulator.
Of course, if @ICOnews is doing an investigation that’s different. (But I doubt they are)
@EinsteinsAttic @NHSDigital Is there any way of finding out & seeing the information sent to GP practices?
The number who seem never to have heard of #GPDPR is really worrying (https://t.co/Qbh9J1epKN they have to consent): would calling it #CareData2 jog memory? 2014 isn't *that* long ago!
@rcgp @phcsg
@docneilb @KailashChandOBE This is brilliant @docneilb. Thankyou for making such a clear website that helps inform patients and the public as well as staff how to make sense of what is happening to the data about them https://t.co/n7RxFBTh8h @griffglen @DowAlan @DrFJameel @rvautrey #CareData2
Plans to share NHS data must be reconsidered
https://t.co/7MfJQ1Ovwe
@FT
#caredata2 #privacy #GDPR #GPDPR
@Foxglovelegal @JustTreatment @madhumita29 @FT Thx for highlighting on #r4
DOI, need to get narrative right for @GreatNorthCare for direct care
Default Opted in by 23/June.!!
No dpia notice for practice websites
No public campaign
Already causing additional work for primary care
@docneilb @PrivacyMatters
#caredata2
@EinsteinsAttic @hawktalk_blog @EeHRN @ICOnews *If* - a big IF - there *is* a #DPIA , is there ever an acceptable reason for not publishing it *before* implementing #GPDPR ?
It does make me suspect that (if it exists) it might have raised questions about the whole system of #CareData2 !
(caps to help screen readers)
@phcsg
'Biggest data grab' in NHS history stuffs GP records in a central store for 'research' – and the time to opt out is now
https://t.co/udql4gpjUk
@datadictum #caredata2
more at:
https://t.co/Oc5dtQpQbE
Your GP record, your choice, your control
@dochawking @TheBMA @rcgp @phcsg Post-pandemic, this #GPES extraction will likely be more of a #COVID19 #DiseaseRegistry than @NHSEngland's lifelong, system-wide micromanaging ambition for #caredata2. But of course, ANY extraction of this scale has consequences...
We're keeping a close eye on this!
Just leaving this here, as an 'aide memoire' for #caredata2...
Cost of #BorisLetter 👇 telling people to stay indoors: £5.7m (2020)
Cost of #caredata junkmail leaflet* re. exploiting your lifelong medical records: £1m (2014)
--
*https://t.co/xNaUuZRKpF
For those who want to know what the Boris Johnson letter looks like in physical form
#Trust's a word we've been hearing a lot around use of #data for *years* now. Some might say it's time for action.
What's for sure is, if uses are not #consensual, #safe & #transparent then - sooner or later - you're gonna do a #caredata. Or #caredata2.
Trust is a word we are hearing a lot today at the #WeFEvents on priorities for the national data strategy. I’m really interested in how we look under the hood on this - more about the trustfulness of how data are used, and the common understanding of what the rules should be
Shockingly low uptake of the #NationalDataOptOut - less than a tenth of the number who opted out by the mechanism they're turning off today - almost as if they didn't want people to know they have a choice.
Just wait for #caredata2...
https://t.co/qSjGRiyACR
Ah, @NHSEngland's #DataLake / #caredata2...
First surfaced in January 2017: https://t.co/rTzlQz8p0P
then again in August: https://t.co/4VS7AMpd4A
and again in October (by which point @nhscio had removed his name from the document): https://t.co/Euu7AgGffm
@jondcarroll No chance. It’s all about interoperable data architecture
love the airline analogy. apparently DH have consulted widely on #caredata2- was it the day Chilcot was published... https://t.co/uKRWzGkc0u
Strap yerself in and adopt the brace position. The DH are going to have another go at care.data. https://t.co/SIYApECqx5
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