There seemed to be some confusion about (the use of) words in @CommonsHealth Committee yesterday morning, so here's a [Thread] to try to clarify.

First "#commercial". It is of course the case that many parts of the #NHS use commercial providers, e.g. of software, whether that... @Microsoft365 for word processing, spreadsheets & e-mail; or IT systems to handle patients' records in hospitals (e.g. @CernerUK) & General Practice (e.g. @TPP_SystmOne, @EMISHealth, @CegedimHS); or software to drive complicated equipment like #MRIscanners, etc.

This is...
..entirely normal use of #commercial software & software services, for which the #NHS body is the #DataController. Apart from when that software goes wrong, I don't believe many would have concerns about this.

Then there are #commercial providers of #NHS services, about which...
...quite a few people DO have concerns (especially regarding #privatisation) but it should be noted that this is not the case for ALL such #providers, e.g. GP practices are generally run as private companies or partnerships, and GPs are amongst the most trusted people in the NHS.
Yesterday's @CommonsHealth session focused on *non-care* uses of #GP (and #hospital) data for "Planning and Research':…

...which includes a mix of both #publicly and #commercially-funded and #publicly and #commercially-delivered uses, as you can see...
...from @NHSDigital's 'data release register':

Studies consistently show that a significant number of people have concerns if #commercial interests are in involved, even if their data is being used for legitimate #research, e.g.…
What I was talking about, though, is #commercial #reuse, i.e. when an organisation pays to have a copy of (millions of) patients' individual-level, identifiable ('pseudonymised') data & pays to have #sublicencing rights to that data, for £10,000 per year:…
These organisations, called "#InformationIntermediaries", then service THEIR customers - which include #Pharma #marketers (not just #researchers) and other #commercial #tech, #data and #device companies.

No list of these 'end customers' - or their projects - is published...
...and there's not even a published list of every organisation that has been given #permission to #sublicence patients' data!

#CommercialReuse is the massive '#loophole' in the current system that allows companies to #profit from use of patients' data without #scrutiny...
...or #transparency of those uses. (Noting that the #InformationIntermediaries' exist and run on the #profit they make from servicing this trade.)

Moving to a '#TRE-only' arrangement would close this 'loophole', and require EVERYONE who wants access to #PatientsData to apply... the same way; following the same #rules and #procedures, and having to #justify every use they make - at least some of which are currently #invisible* to us.

*@NHSDigital does do SOME sample #audits of ITS customers, but not of the #InformationIntermediaries' customers...
This is why ending '#dissemination' (i.e. sending out #copies of patients' data) and moving to '#TRE-only' is such a welcome step.

Done properly, it should end some of the most #toxic, #untrustworthy uses of #NHSdata, and allow every #patient to #know how their data's been used.
P.S. You can bet there's going to be intense #lobbying of Ministers by the #InformationIntermediaries & their #customers, whose business models are threatened by a move to #TRE.

However, if their uses are all #legitimate, then they'd be able to get them approved by @NHSDigital.

• • •

Missing some Tweet in this thread? You can try to force a refresh

Keep Current with Phil Booth

Phil Booth Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!


Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @EinsteinsAttic

19 Jul
The #GPDPR #GPdata upload will still be going ahead, but it will no longer be starting on 1 September 2021 - the programme will have to meet 3 (or 4) #tests first instead:…
We'll let you do the diff between the "criteria" laid out in the announcement on @NHSDigital website and the "key areas of work" listed in the letter to GPs from @Jochurchill4 this afternoon:…
Which will all make the oral evidence session in front of @CommonsHealth Committee tomorrow morning quite interesting...…

See you there!
Read 6 tweets
18 Jul
The terms of the 'Daily Contact Testing Study' (#DCTS) are here:

If 50% of volunteers have to do daily #LFTs instead of self-isolating, the odds of both the PM & Chancellor falling into that group aren't that high.

But the optics sure aren't great... Image
More info on the "40,000 person #DailyContactTestingStudy", which launched on 9 May, here:…

Given more than 500k people were pinged by the app *in the first week of July alone*, it seems a bit odd the study isn't already full:…
The guidance for those in the non-self-isolating group for #DCTS is worth reading:…

They should avoid "small, poorly ventilated public places for more than 15 mins", "public transport", "visiting others indoors" & "shouting, singing or talking loudly" 🤔 ImageImage
Read 5 tweets
18 Jul
Hmm. I don't think anyone is claiming @Facebook is *solely* responsible for #antivax #misinformation, but it cannot be disputed the #platforms have been major contributors.

#Facebook can't have it both ways; to refuse to #apologise or accept any #responsibility, but then to...
...imply that what it is doing is helping 'solve the problem' (even if it is!) simply underlines @Facebook's chronic lack of #accountability & #SelfAwareness.

"Look how good we are for clearing up some of the sewage we pump out" is more an insult than any sort of justification.
Excellent #counterpoint [Thread] with plenty of references, on the wider growth of #misinformation networks in the #antivax space:

Read 5 tweets
17 Jul
Hmm. Knowing a little about newspapers, it's quite possible David himself didn't write the headline and blurb - though the thrust of his review is clear, the direct reference to sex as a "social construct" is Joyce's quote: Image
I'm not so sure that isn't a #StrawMan; an extreme position being characterised as if it were the nub of the debate. I don't know, but can't imagine many would vehemently disagree with these commonly held definitions:

(Though I expect there are nuances.)
I first encountered grassroots #trans groups in the '00s when campaigning against @ukhomeoffice #IDcards & the #NationalIdentityRegister.

They were generous, tolerant & open - explaining to someone with no knowledge the many challenges of #transition, including living with an...
Read 10 tweets
17 Jul
Like this chap David Martin that @SeeJayRich recently introduced me to:

#SnakeOil salesmen have and always will always prey on the vulnerable, but the "#DisinformationDozen" (and others) appear to have turned it into an industry:… Image
On the 'poacher-turned-gamekeeper' principle, maybe @BorisJohnson will decide to make @grantshapps the UK's pandemic #MisinformationTzar on this issue...…
Read 4 tweets

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!

Follow Us on Twitter!