Discover and read the best of Twitter Threads about #caredotdata
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This headline 👇 will be no surprise to anyone who's been following @NHSEngland's plans (and actions) for a while.
But @JonUngoedThomas's article reveals some crucial details about what's intended for your #NHS #HealthRecords that are worth unpacking...
theguardian.com/society/2022/n…
But @JonUngoedThomas's article reveals some crucial details about what's intended for your #NHS #HealthRecords that are worth unpacking...
theguardian.com/society/2022/n…
First, and possibly most significantly, is @NHSEngland officials' confirmation that its '#FederatedDataPlatform' will incorporate patients across England's #SharedCareRecords:
Why is this so important? Because #SharedCareRecords - which every new #ICS* is supposed to have - include your #GPdata, which @NHSEngland has been trying to get hold of for years (most recently last summer)...
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*#IntegratedCareSystem explainer here:
kingsfund.org.uk/publications/i…
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*#IntegratedCareSystem explainer here:
kingsfund.org.uk/publications/i…
So let’s talk about where things got up to with your #HealthData, before Rishi Sunak started talking about the need to generate trust in Government with “#integrity” and “#accountability”…
gov.uk/government/spe…
gov.uk/government/spe…
Earlier today we got a bunch of detail out of @NHSDigital’s Board papers and services performance pack - what of that will continue post-#merger?
N.B. The chair of NHS Digital announced today’s meeting would be the last public meeting of the Board...
N.B. The chair of NHS Digital announced today’s meeting would be the last public meeting of the Board...
With the news that the Government is rushing through @NHSEngland’s takeover of the statutory safe haven (@NHSDigital) with about the level of planning that went into the 'fiscal event', where exactly *are* things as the former/new Sec State starts work?
Bad enough that @SensyneHealth has cost NHS Trusts nearly ÂŁ15 million - Lord Drayson's claim to be 'giving something back to the NHS' lies in tatters - but what people should *really* be asking about is the MILLIONS of #patients' data the company claims to be processing...
...because, as our letter to the Trusts in April pointed out, at least some of their patients' data that they handed over is #linkable #pseudonymised data - i.e. it is #identifiable, thus #PersonalData in UK law:
medconfidential.org/wp-content/upl…
medconfidential.org/wp-content/upl…
So while @SensyneHealth's #shareholders might want to check the company's claims about the #amount of NHS patients' data it actually has, those Trusts that HAVE passed #identifiable data to #Sensyne should terminate their agreements asap - and demand certified #deletion, too...
I see #NHSEx has published the slides from its @HDR_UK “Data Access & Discovery” event, charmingly subtitled “A Forest Through the TREs” - on YouTube, if you want to listen:
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*I thought the phrase was “cannot see the forest for the TREs”, but hey...
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*I thought the phrase was “cannot see the forest for the TREs”, but hey...
Let’s take a look:
hdruk.ac.uk/wp-content/upl…
One reason we use the category term #TRE to refer to Trusted Research (or any other use) Environments that meet the #FiveSafes is that everyone wants to call their own TRE something different, so no-one really knows what they mean...
hdruk.ac.uk/wp-content/upl…
One reason we use the category term #TRE to refer to Trusted Research (or any other use) Environments that meet the #FiveSafes is that everyone wants to call their own TRE something different, so no-one really knows what they mean...
Call yours what you like (e.g. for @ONS it's their Secure Research Service) but if it only does four #Safes, or three Safes - and if it isn’t also #consensual and fully #transparent - then it's not a #trustworthy TRE...
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...
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...
"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…
"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…
