Thread by @EinsteinsAttic

Hi, @BHFDataScience! Please could you point me to a copy of your letter that is reported here:

theguardian.com/science/2021/j…

I've checked your website, but I can't seem to find a copy:

hdruk.ac.uk/helping-with-h…

Ah, no worries - I see it now. You tweeted a link to it, and I see it is on @HDR_UK's website:

hdruk.ac.uk/news/nhs-digit…

On reading your letter, @medConfidential would heartily agree with paragraphs 1, 3 and 5...

On paragraph 3, we very much agree that #trustworthy use of patient data for #ethically-approved #research is good.

But not ALL intended uses of #GPDPR *are* trustworthy, as @NHSDigital's own data release registers confirm:

theysolditanyway.com

But we feel characterising #GPDPR as “@MattHancock’s sneaky #GPdata grab” is entirely #justified:

1) The programme is #Directed by the Secretary of State;

2) It has been rushed out after supposedly “three years” of development, giving GPs and patients just 6-7 weeks’ notice...

...of the extraction of the GP history (not the full record, but everything medically meaningful) of every man, woman & child currently registered with a GP in England;

3) It *is* #GPdata, and the first upload will extract every patient's lifelong GP history to date, with...

...daily updates thereafter.

4) #GPDPR has been appallingly and confusingly (mis)communicated by @NHSDigital and the Government - which remained almost entirely silent about the scheme, until announcing its delay...

Noting also the #GPdata extracted will NOT be anonymous; it will be reversibly #pseudonymised.

And, quite aside from legitimate #research uses, copies of the data WILL be disseminated for payment (“sold”) to third parties. Here’s this year’s price list:

digital.nhs.uk/services/data-…

It is for others to determine the extent of #UKHRA's "leadership" on #TREs and the #FiveSafes.

We would just note @medConfidential recommended @ONS's #SafeSetting to Parliament in 2014 during the #caredata debacle, 3 years before @HDR_UK was founded & 5 years before #UKHDRA...

Your paragraph 5 is, however, actively #misleading in that it fails to even mention the #Type1 opt-out which will stop patients' #GPdata being #extracted by @NHSDigital - referring ONLY to the #NationalDataOptOut, which does not.

Please correct this.

medconfidential.org/how-to-opt-out/

Picking up on #TREs, which we've been talking to @HDR_UK about, amongst other things.

Of course we know how to do the proper (#FiveSafes #TRE) #safe part of #consensual, #safe and #transparent - and have done for a *long* time - but that not only has to be DONE, it has to be...

...SEEN TO BE DONE before the #GPdata programme can even look at doing "better communications" and #consent.

Else it’ll just be @MattHancock's 🤞 promise (and his replacement's?) that things'll be safer tomorrow…