Thread by @marcus_baw

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.

ft.com/content/dc01b3…

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

independent.co.uk/news/uk/politi…

@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.

gov.uk/government/pub…

journals.sagepub.com/doi/full/10.11…

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

bmj.com/content/376/bm…

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.