Thread by @EinsteinsAttic

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.