Snail mail would be a fool-proof way to inform patients about plans to slurp GP data, but UK govt won't commit
- Reference: 1626869707
- News link: https://www.theregister.co.uk/2021/07/21/health_committee_gpdpr_engagement/
- Source link:
During a one-off session of the Parliament's Health and Social Care Committee, Lord Bethell of Romford, Under Secretary of State for Health, twice refused to agree to write to patients individually explaining how use and distribution of their data would change under government plans, and what their rights would be for opting out.
Lack of communication with patients over their data rights has been one of the key criticisms of the scheme to extract patient data from GP systems and hold it centrally for what the government describes as planning and research purposes [1]under plans first announced in May .
[2]
Critics of the General Practice Data for Planning and Research (GPDPR) have argued that communication had been limited NHS Digital's website, hardly the internet's most popular landing page, a few tweets, and a downloadable poster for GP practices. Initially, patients had been given little more than six weeks to understand the scheme and their rights to opt out before the 1 July deadline.
[3]
[4]
This week, NHS Digital, the non-departmental government body running the scheme, [5]agreed to move that deadline for a second time . Among other commitments, it said it would not siphon off GP data until a "campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices."
But Lord Bethell would not commit to sending a letter to each patient as part of that programme.
[6]
"We have to start in sequence with the healthcare system itself and we have to talk to GPs and health care system. I'm not ruling it out; I'm saying that I'm not prepared to commit to it today. I want to understand what we need to do to actually win patients. I'm not persuaded... a letter is the thing that's going to make the difference."
He said letters could be a "clunky form of communication" to engage patients. But campaigners have argued that, with millions of people without regular access to online information, a personally addressed letter is the best way to let them understand the changes and their rights.
[7]England's controversial extraction of personal medical histories from GP systems is delayed for a second time
[8]Backbench Tory campaigner promises judicial review of data grab of English GP patients unless UK government changes tack
[9]BMA warns NHS Digital's own confidentiality guardian could halt English GP data grab unless communication with public improves
[10]UK health secretary Matt Hancock follows delay to GP data grab with campaign called 'Data saves lives'
With [11]a volley of criticism from the medical profession leading up to the first delay in the programme during June, Lord Bethell admitted that "it is frustrating that we have got off on the wrong foot."
But he argued that because of the pandemic the programme had been born in "difficult circumstances."
The new approach would mean there were not set deadlines for when NHS Digital would extract data, instead working on "mutually agreed tests" with GPs, [12]as described in the statement announcing the second delay .
[13]
Lord Bethell, who twice lost elections to be an MP, took the opportunity to lay out what he sees as the "opportunities" for the UK economy in medical data sharing.
Asked by committee member and Conservative MP Paul Bristow if making the UK "a destination for clinical and scientific research" plays into his thinking when it comes to using patient data, the Conservative hereditary peer in the House of Lords said: "Massively."
He explained the UK had put use of data and clinical research on the agenda of the [14]G7 Health Ministers' Meeting in June . "Other health secretaries of state from the developed nations [were all] very envious of opportunity in the UK… using the NHS as a platform for clinical research and driving innovation in therapeutics and devices, they could all see that the UK [is] fantastically placed for that: we desperately need to take advantage of that opportunity."
Under questioning, Simon Bolton, interim chief executive at NHS Digital, said patient data was released to private companies for marketing. "We do not release data for it to be to be sold for marketing," he said. However, Simon Madden, director of Policy and strategy at NHSX, the Department for Health and Social Care's digital transformation body, said the NHS did not sell data but sometimes "we asked for people to pay for... transaction costs."
At the risk of being mired in semantics, it is right to point out that NHS Digital does pass on data to companies that specialise in providing market access information to third parties, as [15]The Register detailed .
Committee member Barbara Keeley, a Labour MP, pointed out during the session that Experian Marketing Services had been given access to data.
Lord Bethell offered to provide the committee with more information on that transaction at a later date but maintained that private companies were "not authorised" under their agreements with NHS Digital to use the data for marketing. ®
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[1] https://www.theregister.com/2021/05/17/nhs_data_market_access/
[2] https://pubads.g.doubleclick.net/gampad/jump?co=1&iu=/6978/reg_software/databases&sz=300x50%7C300x100%7C300x250%7C300x251%7C300x252%7C300x600%7C300x601&tile=2&c=2YPhEnNdhjf-hdqN5AzAa2gAAAFA&t=ct%3Dns%26unitnum%3D2%26raptor%3Dcondor%26pos%3Dtop%26test%3D0
[3] https://pubads.g.doubleclick.net/gampad/jump?co=1&iu=/6978/reg_software/databases&sz=300x50%7C300x100%7C300x250%7C300x251%7C300x252%7C300x600%7C300x601&tile=4&c=44YPhEnNdhjf-hdqN5AzAa2gAAAFA&t=ct%3Dns%26unitnum%3D4%26raptor%3Dfalcon%26pos%3Dmid%26test%3D0
[4] https://pubads.g.doubleclick.net/gampad/jump?co=1&iu=/6978/reg_software/databases&sz=300x50%7C300x100%7C300x250%7C300x251%7C300x252%7C300x600%7C300x601&tile=3&c=33YPhEnNdhjf-hdqN5AzAa2gAAAFA&t=ct%3Dns%26unitnum%3D3%26raptor%3Deagle%26pos%3Dmid%26test%3D0
[5] https://www.theregister.com/2021/07/20/nhs_data_grab_delayed_again/
[6] https://pubads.g.doubleclick.net/gampad/jump?co=1&iu=/6978/reg_software/databases&sz=300x50%7C300x100%7C300x250%7C300x251%7C300x252%7C300x600%7C300x601&tile=4&c=44YPhEnNdhjf-hdqN5AzAa2gAAAFA&t=ct%3Dns%26unitnum%3D4%26raptor%3Dfalcon%26pos%3Dmid%26test%3D0
[7] https://www.theregister.com/2021/07/20/nhs_data_grab_delayed_again/
[8] https://www.theregister.com/2021/06/25/david_davis_gpdpr/
[9] https://www.theregister.com/2021/06/25/bma_says_nhs_digitals_own/
[10] https://www.theregister.com/2021/06/22/uk_health_secretary_data_saves_lives/
[11] https://www.theregister.com/2021/06/04/bma_and_royal_college_of/
[12] https://www.theregister.com/2021/07/20/nhs_data_grab_delayed_again/
[13] https://pubads.g.doubleclick.net/gampad/jump?co=1&iu=/6978/reg_software/databases&sz=300x50%7C300x100%7C300x250%7C300x251%7C300x252%7C300x600%7C300x601&tile=3&c=33YPhEnNdhjf-hdqN5AzAa2gAAAFA&t=ct%3Dns%26unitnum%3D3%26raptor%3Deagle%26pos%3Dmid%26test%3D0
[14] https://www.gov.uk/government/publications/g7-health-ministers-meeting-june-2021-communique/g7-health-ministers-meeting-communique-oxford-4-june-2021
[15] https://www.theregister.com/2021/05/17/nhs_data_market_access/
[16] https://whitepapers.theregister.com/
Re: Experian
So THAT'S why their latest advert is set in a dentist's office... makes sense now.
Re: Experian
The same Experian that makes you jump through hoops to fix incorrect information (though at this point I'm thinking maybe that's actually something I should encourage) and is generally evasive about what information it holds, who has access to it and why. The answers to which seem to be "stuff", "anyone who pays" and "because", AFAICT.
Of course they’re not going to commit to something that might reduce engagement - and hence reduce the amount of money that they get to stuff into their pockets.
Once a political party strays too far from the balanced centre, corruption becomes rife. And there’s no doubt in my mind that this conservative government is as venal, corrupt and incompetent as any from the past century or more. Perhaps not quite as bad as Trumps Republicans, but heading in that direction and dragging the UK to hell with them.
Nevertheless, they’ve done a number on the uninformed and disinterested UK electorate, reducing key policy issues to soundbites that they can hide and dissemble behind. Ignorant witlessisms like “yeah, we’re not great - but at least we’re not Labour or the Lib Dems”. And the public, slow on a diet of tabloid press, lap it up without a second thought. We’ve got the government we deserve, and we’re being royally screwed by them in everything they do.
"The UK government has refused to commit to sending a letter to 55 million patients"
They could have just handed a leaflet out with each first vaccine given. That would have been 46 million to date!
Re: "The UK government has refused to commit to sending a letter to 55 million patients"
Why the troll icon? That’s a bloody good idea. If they wanted to do it properly, it would be a separate leaflet with a bold headline. But even as money-grubbing opportunists they could have buried it in the small print of a vaccine information leaflet - and then say that they’d provided this information.
It does omit the antivaxxers, but I suspect that the antivaxxers are so deep in conspiracy theories that they don’t have much interest in genuine threats.
Re: "The UK government has refused to commit to sending a letter to 55 million patients"
They managed to send out a leaflet about COVID to everyone right enough. Alternatively just tell the Lib Dems they can include an election message on the letter and everyone will get six copies within a week at zero cost to the NHS.
Sending a letter to everybody saying they will be screwed and their personal health data sold for marketing purpose? That isn't indeed the best way to win hearts and minds, so it seems sensible to refuse to do it. For some, it's better to screw in the dark.
Weasel words
"when ...the campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices."
So when the public awareness goes from 0.1% to 0.2 % this is a success, and gives the go ahead?
I am reminded of the Hitch-hiker's quote...
“But the plans were on display…”
“On display? I eventually had to go down to the cellar to find them.”
“That’s the display department.”
“With a flashlight.”
“Ah, well, the lights had probably gone.”
“So had the stairs.”
“But look, you found the notice, didn’t you?”
“Yes,” said Arthur, “yes I did. It was on display in the bottom of a locked filing cabinet stuck in a disused lavatory with a sign on the door saying ‘Beware of the Leopard.”
Douglas Adams.
Dear Patient,
This letter is from your health service, to advise you that unless you copy this letter to ten more people, bad luck will unfortunately attend you: specifically, in that your and their health data will be scarfed up to be made available to unknown parties with unknown aims.
You have been warned.
Do not fail to pass this letter on.
Your NHS
Dear [insert name],
We hope you are having a great day. It has come to our attention that you have following vulnerabilities:
[insert a list of health issues]
Worry not, we have only given access to this list to our marketing partner.
If you don't want other organisations to know about your vulnerabilities, better start looking for a way to opt out. If you need to know more about how to opt out call [insert defunct number].
Did you know that if your insurer knew about [insert disease], your premiums could go up by 500%?
If you feeling anxious now, call your GP and ask about [insert a drug name your mate's pharma company sells to NHS at inflated price].
Remember hands, face, and your place.
NHS
Whar's SO hard about understanding privacy and security?
What's SO hard is that most people are non-thinking, and / or have no critical-thinking skills. AND have been led to believe that computers (computing devices/tablets/'smart'phones) are the panacea for all our problems--most notably, in this, and similar cases, the inconvenience of using the Post Office to thoroughly (almost) guarantee privacy and security of the transmission of personal data (tl;dr--the inconvenience of 'writing a letter').
To paraphrase a very recent comment right here on El Reg : "...never put any sensitive information on-line...".
And to NOT paraphrase an e-mail just received (the timing, here, is absolutely impeccable) from one of my physicians:
"Dear xxxxx,
yyyyy. and its affiliated practices are committed to protecting the confidentiality and security of our patients’ information. We are writing to inform you that we recently identified and addressed a data security incident that may have involved some of your information. This notice explains the incident, measures that have been taken, and some steps you can take in response.
On June zzz, yyyyy concluded our investigation of an intrusion into our IT network by cyber criminals and determined that the incident resulted in unauthorized access to certain files on our IT systems that contain patient information. We first identified the intrusion on June 4, 2021 and immediately took our entire network offline out of an abundance of caution to protect our patients and to secure our systems. We also launched an investigation and notified law enforcement..."
[Just to be perfectly clear: this has nothing to do with the sending of e-mails, but simply with the fact that all my personal records, medical and otherwise-- including credit card information are kept in a computer-based system. I NEVER allow a medical practice--or anyone else, for that matter--to communicate sensitive information via e-mail]
There is a very good reason that firms which require data privacy still require the use of facsimile ("faxes") or some form of courier for information / data transmission.
You want data privacy and security? The absolutely best way, for the price, is via mail--or "post'', for you folks of the British persuasion.
Re: Whar's SO hard about understanding privacy and security?
So what you're saying is... there's no point telling everyone because it'll just happen anyway?
What do you want?
Information.
Whose side are you on?
That would be telling. We want information...information... information!!!
You won't get it!
By hook or by crook, we will.
Re: Whar's SO hard about understanding privacy and security?
Who are you?
the new number 2
who is number 1?
you are number 54,003,232
I am not a number... I am a free patient!
Letters
They are pretty good at sending vaccination invite letters. My son has had four so far. Petty he's not living in the UK this year otherwise he would have gotten himself vaccinated.
a hancocky idea
design an app with a sole feature to ask your permission to share 'your' data, make it mandatory to install and activate it (T&T apply), then send a bill to Rishi Sunak, I dunno, 30M enough, I should think?
What a joker
"... to actually win patients."
What? It's not Texas Hold 'Em. You aren't in a position to "win". Maybe he's getting confused with how to win [1]patience . If he cannot win a game of solitaire, maybe he should play with himself some more 'til he figures it out.
"...the programme had been born in "difficult circumstances."
You tried to slide it in under the radar during a pandemic. You got caught out. Shame on you. And many minuses on trust for you to claim back. GLWT.
"...we desperately need to take advantage of that opportunity."
So, write letters to every individual involved and try to regain our trust. Again GLWT. It was okay for Covid comms, what's different here? Oh! You know you'll "win" fuck all.
Oh, and make it opt in you scrub!
[1] https://en.wikipedia.org/wiki/Patience_(game)
Experian
The same Experian that had multiple data leaks has access to our sensitive data for "marketing purposes"?
People should be going to prison, in my opinion.
They are so keen on grabbing this data, this begs for national inquiry why are they itching some much.