Medical records

Oldjohnw
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Medical records

Post by Oldjohnw »

A number of articles have appeared in the press, such as this:

https://www.theguardian.com/commentisfr ... SApp_Other

which warn us that the government is grabbing by stealth our identifiable medical records, not just anonymised statistics. Some accounts suggest that they can be sold.

Is this true and does it matter? Is it part of a trade deal with the US? Privatising the NHS? I don’t like conspiracy but we have a government which does not have our best interests at heart. It would sell its granny for a few quid for its mates.

Jonathan?
John
axel_knutt
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Re: Medical records

Post by axel_knutt »

If hordes of people opt out, it'll bias the results of the research it's used for.
Personally, I'm not fazed, my medical history has already been the subject of public gossip for the last 25 years anyway, so it doesn't make much odds.
“I'm not upset that you lied to me, I'm upset that from now on I can't believe you.”
― Friedrich Nietzsche
Oldjohnw
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Re: Medical records

Post by Oldjohnw »

John
Psamathe
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Re: Medical records

Post by Psamathe »

My concern is over the ill-defined use and how our Government has something of a track record of misusing data. Only takes a few MPs to spot they can get ££££ from selling the data they already have and it's travelled to all sorts of people you might not want to have it.

I've probably opted out (but try getting hold of NHS Digital to check the ambiguities on their web site and you'll get tired of listening to their on-hold waiting tape loops for hours (literally).

I'd be happy allow my medical records to be used for NHS planning and even some commercial pharmaceutical research where the results of that research are provided to the public domain, no copyright and any resulting product from using that data is sold at a sensible affordable price to everywhere, etc. - which is never going to be agreed to by any of the Big Pharma's which highlights one aspect I think is very wrong with the way society has opted to rely on Big Pharma for so much pharmaceutical product development ...

Alternatively if NHS Digital what to release my data beyond NHS use they can easily set-up a system or e-mail request with a link for you to permit (default deny on no response). You get an e-mail along the lines of "We want to release your anonymised medical records to Purdue Pharma ..." with a statement from Purdue Pharma about what they want it for and undertakings with link "I agree/approve the release in this instance" and "I deny release in this instance" (which also happens if you don't respond). Technically very easy.

But as it stands for me it's too broad and I strongly dislike their use of not widely publicised opt-out (so you are assumed to have opted-in if you are not aware of what they are doing!).

Ian
David2504
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Re: Medical records

Post by David2504 »

Introduction has been postponed to September to allow further consultation and review
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simonineaston
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Re: Medical records

Post by simonineaston »

(note this is discussed elsewhere)
I am crystal-clear in my mind that the current neo-liberal players are in a super-strong position and will not hesitate to press their advantage, and by placing key personnel in key posts, inc ceo of NHS England, they will move hell & high-water to free up the dataset to all comers, it being a Gift from God to actuarians. Under cover of the Covid pandemic (they know full well there will be a flurry of activity this autumn, centred on return-to-school, booster jabs / season flu protection to muddy the waters) they will pounce & once the cat's out the bag, they will be perfectly poised to move on to monetising the nation's health - don't forget that this is their avowed intention and that the current sec. for state is a close personal chum of many of the players...
And although I am now speculating like crazy, let's not forget that a significant proportion of this data is NOT truly anonymous and that these people are intending to ease towards an insurance-based funding system... this should be sending deep shivers down the spine of anyone who is currently or likely to be, a user of our traditional, free-at-point-of-delivery, NHS!! They have spent a very long time teeing this strategy up and they will not give up easily. They are on record as saying that Covid is the opportunity they've all been waiting for - The Govester and his silly little million-pound contract give-away is chicken-feed compared with what these people have got planned...
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ket
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Re: Medical records

Post by ket »

David2504 wrote: 10 Jun 2021, 8:56pm Introduction has been postponed to September to allow further consultation and review
But deadline for opt out is unchanged at 23rd June.
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simonineaston
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Re: Medical records

Post by simonineaston »

I think in the big scheme of things, opt-out from an individual pov is pointless. The benefit of the data to the parties who are planning to use it for commercial gain (and make no mistake, that's their primary goal) will remain, regardless of a minority of ansty opters-out. Like I said, once the cat's out the bag, they have their objective. A better metaphore would be Pandora's Box... once they can crunch the numbers, they will have the whip-hand with respect to costs, premiums and profits. Mark my words...
The only way to prevent this wholesale dismantling of the principles that the UK's national health service was built on would be to mount a legal challenge to the data grab. That challenge is underway, as far as I know.
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Govnor
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Re: Medical records

Post by Govnor »

Will it matter as we have care of address?
David2504
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Re: Medical records

Post by David2504 »

There’s two opt out options. Opt out of GP sharing your data with NHS database. Opt out of NHS sharing your data with outside organisations

https://fullfact.org/health/nhs-data/
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simonineaston
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Re: Medical records

Post by simonineaston »

Thanks for the link, David. From that site, I see that:
NHS Digital says: “Any data that NHS Digital collects will only be used for health and care purposes. It is never shared with marketing or insurance companies.”
However, I note too that Grenfell Tower got wrapped in flammible panelling that wasn't suitable for the use and that everbody involved seems v. keen to blame everybody else... I am not confident that our health records won't end up being used in ways we will regret.
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Psamathe
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Re: Medical records

Post by Psamathe »

David2504 wrote: 11 Jun 2021, 8:54am There’s two opt out options. Opt out of GP sharing your data with NHS database. Opt out of NHS sharing your data with outside organisations

https://fullfact.org/health/nhs-data/
The opt-outs are quite complex to understand and NHS Digital's web site is not particularly clear. I opted-out on NHS Digital's web site but all the press reports were saying you have to submit a form to your GP and the NHS Digital opt-out online makes (or made) no reference to the latest schemings.

And impossible to get through to NHS Digital on the phone number they publish along with the opt-out (for opt-out enquiries). And they don't respond to e-mails to the e-mail address they publish on their opt-out page for the purpose of opting-out.

And then you discover there is a Type 1 Opt-out as well and that is a form that out complete, sign and get to your GP except Type-1 opt-outs are being ended and changed to something else ...

You you were designing a system to prevent people using it ... this is what you'd design.

Which all adds to my complete distrust in NHS Digital.

Ian
Psamathe
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Re: Medical records

Post by Psamathe »

simonineaston wrote: 10 Jun 2021, 10:27pm I think in the big scheme of things, opt-out from an individual pov is pointless. The benefit of the data to the parties who are planning to use it for commercial gain (and make no mistake, that's their primary goal) will remain, regardless of a minority of ansty opters-out. Like I said, once the cat's out the bag, they have their objective. A better metaphore would be Pandora's Box... once they can crunch the numbers, they will have the whip-hand with respect to costs, premiums and profits. Mark my words...
The only way to prevent this wholesale dismantling of the principles that the UK's national health service was built on would be to mount a legal challenge to the data grab. That challenge is underway, as far as I know.
I agree but is is one small vote saying "I'm not happy about this". I still can't just give up and let it all happen without raising objections as and when I can. Maybe if these things are even slightly frustrated is might slow or reduce what the current incumbents are doing at least until we get poeple more concerned about the people than the profits.

Appart from which I don't want my medical records being going to many commercial "for profit" organisations without my explicit consent for the particular intended use.

Ian
Psamathe
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Re: Medical records

Post by Psamathe »

simonineaston wrote: 11 Jun 2021, 9:22am Thanks for the link, David. From that site, I see that:
NHS Digital says: “Any data that NHS Digital collects will only be used for health and care purposes. It is never shared with marketing or insurance companies.”
....
Those two identified uses are not the only 3rd party/commercial use I'd not be happy with. e.g. providing my medical records to Purdue Pharma to help them defend a compensation claim or to some questionable Big Pharma to develop some treatment that ends-up costing £2m a dose and is thus rejected by NICE and outside the reach of much of the world but lines the pockets of their shareholders nicely. Not that they've done that but as I see it their rules could and with the UK stepping away from all the EU privacy rules and embracing lack of US rules - if NHS Digital wont tell me exactly who is getting my data or even ask my permission (i.e. default "opt-in") then I'll consider again.

Ian
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simonineaston
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Re: Medical records

Post by simonineaston »

And they don't respond to e-mails to the e-mail address they publish on their opt-out page for the purpose of opting-out.
This is exactly the sort of thing that we're increasingly having foisted on us. (Obviously I don't want to start to sound like a conspiracy-theory-fan-boy stroke grumpy old git stroke swivel-eyed techno-phobe, but maybe it's too late for that!)
These agencies have been around now long enough to be well aware how to play the game. The Game, as I put it, is a combination of legal, commercial and public-relations nouse - the sort of things that you can of course study at degree level these days - how to lie in a hundred high-quality ways... Thus they will go through the motions and when and if they take steps that end up challenged, they can say, in court if necessary, that they did consult, that they did make a helpline available, that they did follow the correct process.
The fact that nobody can get through to speak to anyone and when you're lucky / persistant enough to do so, the kiddie at the end of the line, reading off his/her script absolutely can't answer your questions, is as far as [insert name of agency] is concerned, neither here nor there. Their complience will be duely noted and with a gentle plop, they will slide off the hook.
It may be tactless for me to compare the above with the goings on at Grenfell, but as far as I can see, it's symptomatic of the same illness - that individuals simply don't count anymore and that corporate agencies can and do act entirely without challenge - and worse still when their actions are so deadly that they are eventually made to account of their actions, they simply busily blame everyone else in sight and nobody is taken to task or pays the price of devestating failure...
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