Discover and read the best of Twitter Threads about #COPI
Most recents (5)
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…
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
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.
Which is why it's so important the distinction is made and understood. Conflating the issues is counterproductive.
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…
Without fanfare, the reasons for which will soon become obvious, @NHSEngland finally published its #DataStore "#DisseminationRegister":
england.nhs.uk/publication/da…
18 months after we first pointed out it had to, and over a year since we began requesting it!
Let's take a look...
england.nhs.uk/publication/da…
18 months after we first pointed out it had to, and over a year since we began requesting it!
Let's take a look...
For starters, it's staggering how little information the register actually contains. Just 18 lines, on 18 data flows or extracts over the past 18 months!
This for what has repeatedly been claimed as a "vital #COVID19 resource"?!
Here's a snapshot of ALL of them 👇
This for what has repeatedly been claimed as a "vital #COVID19 resource"?!
Here's a snapshot of ALL of them 👇
Of those 18 data flows, nine of them are to do with the #vaccination programme - and only started from February of this year. A tenth seems to be mis-dated, unless we had a vaccine no-one ever heard of in April 2020? 🤔
Several of the other named purposes we already knew...
Several of the other named purposes we already knew...
Hmm. Exactly what "data-sharing rules" were preventing the use of patients' data *for their direct care*?
Issuing #COPI Notices in a Level 4 emergency is not a generic 'fix', nor is it carte blanche for all #SecondaryUses - however much @NHSEngland & others might wish it were...
Issuing #COPI Notices in a Level 4 emergency is not a generic 'fix', nor is it carte blanche for all #SecondaryUses - however much @NHSEngland & others might wish it were...
...and the #COVID19 data store, outside the pandemic, is essentially a #DiseaseRegistry NOT a licence or infrastructure for technocrats to surveille / micromanage / tell medical professionals how to run hospitals, as has been @NHSEngland's plan all along:
data.parliament.uk/writtenevidenc…
data.parliament.uk/writtenevidenc…
Yes, the NHS has done some amazing things in the pandemic, but for those responsible for the most spectacular and egregious screw-ups of both tech and care to claim those successes and try using them to advance their own political agendas is as disgraceful as it is disingenuous.
