Discover and read the best of Twitter Threads about #DiseaseRegistry
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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.
