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...
...is @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':

parliamentlive.tv/event/index/7f…

...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':

theysolditanyway.com

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.
ipsos.com/sites/default/…
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:

digital.nhs.uk/services/data-…
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...
...in 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.

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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:

digital.nhs.uk/news-and-event…
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:

file-eu.clickdimensions.com/hscicgovuk-amn…
Which will all make the oral evidence session in front of @CommonsHealth Committee tomorrow morning quite interesting...

committees.parliament.uk/event/5286/for…

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

snapsurvey.phe.org.uk/dcts/

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:

gov.uk/government/new…

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:

bbc.co.uk/news/uk-578549…
The guidance for those in the non-self-isolating group for #DCTS is worth reading:

gov.uk/guidance/daily…

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:

counterhate.com/disinformation… Image
On the 'poacher-turned-gamekeeper' principle, maybe @BorisJohnson will decide to make @grantshapps the UK's pandemic #MisinformationTzar on this issue...

theguardian.com/politics/2015/…
Read 4 tweets

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