NHS [England] Data Grab

[Roachmill]

I'm not sure just what to make of this but it sounds decidedly dodgy. From the linked article:

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The NHS is preparing for the "biggest data grab" in the history of the service, giving patients little information or warning about the planned transfer of medical records from GP surgeries in England to a central store for research purposes – and with no prospect of the data being deleted.

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The new service comes with a broadened remit: the data will be used to "support the planning and commissioning of health and care services, the development of health and care policy, public health monitoring and interventions (including COVID-19) and enable many different areas of research."

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...Dr Bhatia said patients may not know their information could be used by US companies planning to bid for work for the NHS. "I do not have any confidence the data will not be [given] to the private sector in the US. Nobody ever checks; once it is anonymised and outside GDPR, they can give it to who you like.

If you know folks registered in England, they can opt out but IDK what the ramifications of doing just that are... but not getting targeted by American "medical" organisations could be one perk 

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The 55 million citizens of England will need to opt out of the involuntary scheme before it is introduced to prevent the entire history of their GP visits being slurped, campaigners told us. The opt-out forms are here.

On the one hand I'm relieved it's only England and not completely not surprised it's happening under a Tory government on the other.

[Ghostrider]

Unless I'm very mistaken the Scottish NHS were involved in some sort of 'centralisation of data for research purposes' (exact small print may well vary) quite some time back, to the point I recall filling up an 'opt out' thingy at some point over it.

[George.]

^Are you possibly thinking of Coronavirus (COVID-19): daily data for Scotland?

[Colin]

Everything is for sale these days, including your grannie...

[Roachmill]

12 hours ago, Ghostrider said:

Unless I'm very mistaken the Scottish NHS were involved in some sort of 'centralisation of data for research purposes' (exact small print may well vary) quite some time back, to the point I recall filling up an 'opt out' thingy at some point over it.

I'm finding diddly on Google or the NHS Scotland site about that but that could be down to bad google-fu. The NHS Scotland site doesn't make it obvious how to access information about what data they hold on you and what's done with it either *cough* GDPR.

NHS England is well aware that news of this data thing is out there. They have their own "mythbusting" page to show for it. While it tries to cover there being no opt-out deadline, it fails to address that once they have your data you cannot have it removed from their systems. It also states their data won't be handed over or sold unless, "it is safe, ethical and legal to do so". They go on, "We do expect organisations who receive data to cover the cost of producing the information they request.". Sounds to me like they fully expect organisations outside of the NHS to, not surprisingly,  buy the data. I'm sure said organisations are all above board and will all only have our best interests at heart. 'Merikan big business won't try and shoehorn themselves into qualifying categories by lobbying (paying) or making a strong case (no trade for you if you don't hand it over) to get it either.

That's me drained of sarcasm for today.

Edited May 14, 2021 by Roachmill

[Capeesh]

The NHS is very last thing of any value left, the final bastion of the post war consensus.

 The greedy Tories of today are a different breed from those from that period, of course they’ll sell it.

The depressing thing for me is when people eventually realise they’ve been conned, it’ll be too late to save it.

Edited May 15, 2021 by Capeesh

[Roachmill]

The Register has another piece on this topic. In a nutshell, data access rules that currently govern 3rd party access to medical data are to cover the new mega dump of patient data... and that is Not Good:

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A recent data release register provided by [Data Access Request Service] DARS shows patient information is indeed used to scope market access by private drug companies through third-party information firms.

Among a long list of NHS and local authority data release records are companies including Wilmington Healthcare, a market research firm, Harvey Walsh, part of "world-class healthcare communications and market access group" OPEN Health and Health iQ which, it says, proves "the value of interventions in healthcare for successful market access."

Wilmington Healthcare is also the publisher of NHS management bible the Health Service Journal. The company's website says it helps clients "create a strategy to position their offering for maximum effect and execute this using a range of our customer engagement tools and go-to-market capabilities." According to the release register for March, its clients for accessing data included Lundbeck Ltd, a Danish drug company.

 

[Ghostrider]

On 14/05/2021 at 10:49, Roachmill said:

I'm finding diddly on Google or the NHS Scotland site about that but that could be down to bad google-fu. The NHS Scotland site doesn't make it obvious how to access information about what data they hold on you and what's done with it either *cough* GDPR.

NHS England is well aware that news of this data thing is out there. They have their own "mythbusting" page to show for it. While it tries to cover there being no opt-out deadline, it fails to address that once they have your data you cannot have it removed from their systems. It also states their data won't be handed over or sold unless, "it is safe, ethical and legal to do so". They go on, "We do expect organisations who receive data to cover the cost of producing the information they request.". Sounds to me like they fully expect organisations outside of the NHS to, not surprisingly,  buy the data. I'm sure said organisations are all above board and will all only have our best interests at heart. 'Merikan big business won't try and shoehorn themselves into qualifying categories by lobbying (paying) or making a strong case (no trade for you if you don't hand it over) to get it either.

That's me drained of sarcasm for today.

This is what I was referring to:

https://www.computerweekly.com/news/450414606/NHS-Scotland-launches-GP-information-sharing-system

Yes, 'they say' all data will be anonymised, only be shared with outside third parties where there are clear medical benefits in doing so, and that the data will be deleted once it no longer has relevant usefulness, and that's fine. The trouble is, governments say a great deal, and stick to very, very little of it in the end. Moving goalposts and muddying boundaries are their stock and trade.

Yes, its a far weaker version of what NHS England are talking about, but the fact remains that it is the same basic structure, a centralised confidential patient data collection plan, which requires an 'opt out' rather than an 'opt in', and could suddenly become everything the English proposals are at the stroke of a civil servants pen.

I simply do not trust either governing politicians or their civil servants not to make that pen stroke and say nowt about it, which is why I opted out of even this 'lite' version.

Edited May 30, 2021 by Ghostrider

[George.]

5 hours ago, Ghostrider said:

The trouble is, governments say a great deal, and stick to very, very little of it in the end. Moving goalposts and muddying boundaries are their stock and trade.

Westminster.

Edited May 30, 2021 by George.

[Maddy1984]

I currently manage a GP practice and certainly don't trust it. I am actively encouraging our patients to opt out. The first extraction is delayed until 1st September.