Marcus Baw Profile picture
May 26 18 tweets 13 min read
I'm sure well-intentioned @CamCavendish but this piece completely mashes up #datasharing for #DirectCare of a patient and data sharing for #ResearchAndPlanning, and other 'secondary uses'. These are VERY different in legal basis, IT systems, and privacy.…
It's complex and it doesn't make for punchy articles, but it's very important that we are totally clear about the distinction between Direct Care and Planning/Research.

At present, data sharing for Direct Care STILL lags significantly behind data sharing for secondary uses
Because they are built on totally different technologies, progress towards Research and Planning uses of #GPData doesn't advance the cause for Direct Care one iota.

Which is why it's so important the distinction is made and understood. Conflating the issues is counterproductive.
The worst possible outcome would be that patients mistakenly 'green-light' rampant invasions of privacy hoping that it will improve GP data sharing for Direct Care, but all that happens is that Research and Planning uses get more access.
This section of the @FT article on "data sharing" refers to information sharing for #DirectCare, which is well established legally and ethically in the NHS, and provided through multiple technical platforms such as #SummaryCareRecord, #EmergencyCareSummary, #GPConnect, @accuRx ..
@FT @accuRx Extraordinary circumstances such as the pandemic called for extraordinary governmental overreach into our personal lives. (@NHSEngland is The Government. It's run by @DHSCgovuk also The Government)

Governments should not have identifiable lists of the #ethnicity of citizens.
The #RecoveryTrial was a fully consented, completely normal clinical trial, which could have been done with or without #COPI, so it is disingenuous to link this important research with attempts by @NHSEngland to persist COPI-like access to patients' data (cc @MartinLandray)
Just a reminder here that @NHSEngland is The Government. It is not run by clinicians, or patients for that matter. COPI allowed *temporary* access to medical data for the *express purposes of managing the pandemic*. It does not follow that NHSE now deserve permanent access.
@CamCavendish would you be able to expand at all on who the 'vested interests' are in this article?

C&W trust used data to make their inpatient waiting list more accurate, "cutting it by 28%". But not a single patient was seen faster because of this access to data.
Later in the article the concerns around privacy are articulated quite clearly, although still there is a focus on 'companies' getting access to the data, when the real people we should be worrying about is the Government having access to identifiable healthcare records
Without sufficient oversight of its use of records, governments would grant themselves rights to use your records for other parts of HMG duties. Has this happened already? Yes, in 2017, at @NHSDigital…
@NHSDigital GP notes are incredibly personal and private information.

GPs aren't 'risk averse', they are protecting patients' data from those who would exploit it.

Patient data belongs to the PATIENT. That's why the last two data grabs have rightly failed.
Many of the recent changes to the NHS (in England) would significantly weaken protection for health data.

But it doesn't have to be this way. @bengoldacre has outlined exactly how to do this right.……
Unfortunately @NHSEngland are, right at this moment, about to do exactly the opposite of what the #GoldacreReview recommends by hiring @PalantirTech to run a closed, unaccountable #FederatedDataPlatform

Internally it is recognised that the 'tender' is a foregone conclusion.
@NHSEngland @PalantirTech I would also ask the question of

"how many of the people who are fervently for exploitation of NHS GP data actually use an NHS GP?"

I suspect many of our Honourable Members don't. SO it's not *their* data that will be scooped into NHSE.
This is what the former Chair of @NHSDigital has to say about the current situation. Kingsley Manning resigned from NHSD over the Theresa May NHS Records Data Issue (see Indy article earlier in the thread) #welldonesir…
We have already got ways to "enable NHS England to compare surgical outcomes and GP activity" without the personal health data of every person in England residing within @NHSEngland

NHS England already grossly and wilfully misinterpret the GP activity data they DO have.
Why don’t we trust the government with our health records?

As many of the events of the past few years have shown, including #Partygate, there IS no accountability for government.

Your GP, however, swore an oath to protect your health record.

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More from @marcus_baw

Jun 21, 2021
It really feels like we're in the grip of #NHSdataFEVER...
What's going on?

In last few weeks:

#GPDPR - a huge change in how data that your GP saves in your personal GP record gets shared with the Government. The #DPIA (Data Privacy Impact Assessment) still awaited
#TIGRR - a bonkers, breathless AI-centric libertarian wish-list of data deregulation including abolition of some Articles from our own #GDPR laws (NOT EU law, it's UK law)
Tomorrow there will be a new NHS Data Strategy - which conflates many different uses of data to try to send a ALL DATA GOOD MOAR PLEASE message without any real clarity of thought.
Read 8 tweets
Jun 16, 2021
@NHSEngland today ran a webinar in which it was claimed that the @PalantirTech #Palantir #Foundry data platform used for the COVID-19 Data Store was "a contract awarded in open competition".

This contract had to be obtained by @openDemocracy through legal action.
If the contract itself was kept secret, it is hard to see how the contract could have been awarded in "open competition using normal procurement rules"…
When the contract was published it turned out that the original contract cost was £1. One pound.…

How exactly does an organisation like @NHSEngland think this fits with "normal procurement"?
Read 20 tweets
Jun 15, 2021
RFC: Baw's Unofficial DRAFT standards for "NHS Prescribable Apps":

(I was asked for an opinion by email but thought worth sharing here)

1) App code must be released as open source (and thereby low cost and openly auditable for clinical safety and what data is stored
2) Apps must be developed by the NHS, for the NHS, using in-house technical talent.

3) Apps should gather the absolute minimum of data, and have an absolute ban on 'surprising' T&Cs or unexpected data gathering.
4) App must be fully owned and operated by NHS organisations on a non-profit basis (eg cost recovery only) These need to be seen like the 'generic drugs' of the NHS clinical app world. Safe, understood, cheap, and reliably available.
Read 8 tweets
May 28, 2021
OK, I'm sorry. (I'm not) but BULL SHIT.

I'm calling 'bullshit' on the whole Consultancy scam. @NHSX have commissioned @kscopehealth to help them produce a Digital Clinical Safety Strategy.

Consultancy takes cash, then go and ask dozens of actual (unpaid) experts.
So the Strategy will actually have been written by unpaid NHS safety and other clinical experts, but a private company pockets a wedge of cash for organising a few Teams calls.

On today's call they had us writing our responses in the Teams chat to make their job even easier.
@NHSX seems to be a machine for recruiting for highly paid Director of <NOUN> posts, and then outsourcing the thing that Director is supposed to have expertise in to an outside company.
Read 10 tweets
Mar 26, 2021
NHS tectonic/vulcanology update:

Just when NHSX was all settled in and progress was starting to happen... No eruptions for years... New NHSE Transformation Directorate pops up like a shiny new Icelandic archipelago
...clouds of ash will obscure a clear view of anything for years. Progress will be impeded while locals move their goats away from the lava flows consultancies line up to bathe in the fresh and copious hot springs created by the eruption...
Read 8 tweets
Sep 24, 2020
Aha! I think I've finally worked out how the NHS Brand Police decide on who to pursue legally for use of the NHS brand....

If they're profiting hugely from your association with the NHS: Don't Pursue

If they're acting in good faith to provide a free good for the NHS: ATTACK!!!
@robdykedotcom @carebuntu What happens if you are trying to fix a systemic problem in the NHS for free as volunteers:…
Read 4 tweets

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