Snail mail would be a fool-proof way to inform patients about plans to slurp GP data, but UK govt won't commit

The UK government has refused to commit to sending a letter to 55 million patients in England informing them about its plans to extract their medical data from GP IT systems. 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 …

[elsergiovolador]

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.

[TRT]

Re: Experian

So THAT'S why their latest advert is set in a dentist's office... makes sense now.

[Vometia has insomnia. Again.]

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.

[Velv]

Re: Experian

Experian, a company who's bread and butter is compiling the credit risk of induvials is now going to have access to not only their banking details but their health status?

That's going to make for some interesting changes to peoples credit scores...

[45RPM]

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.

[Phones Sheridan]

"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!

[45RPM]

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.

[TRT]

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.

[Potemkine!]

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.

[Lil Endian]

That sounds like direct honesty, not what'll actually be in the letter if politicians write it.

They only need to win minds. They've already got quite a few hearts as organ donorship was opt-out too. And I doubt anyone would want my brain (or liver, or kidneys or....)

[45RPM]

I’ve got no problem with an opt out on organ donation - it’s not as if it’s Live Organ Donation is it? That would be something completely different.

But if I’m dead, I’m dead - if someone else needs my spare parts then they can have ‘em. It’s not as if I’m going to even know about it. And after Brexit, imports are getting trickier - so they might even be necessary to stop people from starving!

[David Lewis 2]

Soylent Green!

[Lil Endian]

"...to stop people from starving!" <-- That made me LOL (Mr Lecter, I presume..?)

I agree with your comment "But I'm dead". But I still disagree on the opt-out as it's not everyone's outlook. It's their presumption that "it's okay" I find overly controlling. As with our comments that 55 million snail mail letters is fine for Covid, but somehow not for the NHS data slurp, why was the organ donor subject not mailed to all? The under the radar attitude is abhorrent to me.

[Mines the one with the fava beans in.]

[45RPM]

And served with a nice chianti?

[Lil Endian]

Of course!

>smacks lips<

[Rich 11]

why was the organ donor subject not mailed to all?

Because for more than ten years polling had shown that two-thirds of the public were consistently in favour of the idea. In the year before presumed consent became the legal default opt-out forms were made available, and indeed unless you've died in the last fifteen months you can still register your opt-out today and the prior lack of it won't have affected you one iota.

Now contrast that situation with the second health data grab the government have attempted, and how they tried to keep that below the radar, with only the initial six-week period to opt out before consent was presumed. They've done it like that because they know it won't be popular, and that concerns would be raised about selling off the data to US insurers looking to break into the UK. They've done everything exactly the wrong way round, leading everyone to suspect that it all started with the desire to profit from our medical records, with insufficient protection deliberately applied.

[ColinPa]

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.

[Neil Barnes]

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

[elsergiovolador]

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

[nautica]

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.

[TRT]

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.

[42656e4d203239]

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!

[elsergiovolador]

Re: Whar's SO hard about understanding privacy and security?

Numberwang!

[Persona]

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.

[Neil Barnes]

Re: Letters

I've had a number too - in spite of a conversation with a 'must follow the script at all costs' followupperer to whom I made it very clear that I would not be returning to the UK for a vaccination, if for no other reason that I've had the very same vaccination here instead.

The only difference is that mine comes with a Robert Koch Institute confirmation instead of an NHS one, so apparently it doesn't work as well and I still have to hide away if I want to visit.

[Anonymous Coward]

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?

[Lil Endian]

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 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!

[Danny 2]

Define "foolproof"; Define UK

Great article, but two quibbles.

I asked my health centre for a copy of my health records to be emailed out to me, via an encrypted Protonmail account I setup for them in advance. They decided email wasn't secure so printed out my health records and posted them to me. Royal Mail delivered that to my neighbour, who opened it and put it through my door.

"The best laid plans of mice and men gang aft agley."

Some of us know encrypted email is more secure than snail mail, if requested. I've posted about this several times but I'm not whining, a couple of unforeseen and unfortunate errors wrecked my privacy that made me laugh and cry.

I'd suggest the UK government publicises this awful policy on popular TV shows, such as "The Seven Show", "GMTV", "Gogglebox", whatever. Alongside a critic of the policy explaining the implications. How about a Swiss style referendum asking if we want to have our most personal data sold to corporations?

Second quibble, this is England not the UK. We don't have a UK government when it comes to health. Covid is a crowbar that is helping to rip the UK apart from your shopping trolley car crash PM.

[LenG]

Consent should be opt-in.

The title says it all. Data should only be shared with positive permission from the subject of that data. If the government wants to share it has the responsibility to ensure that every participant is fully informed, which can only be the case if explicit permission has been given.

The likelihood that the number of people who would give permission would probably be so small as to make the whole excercise worthless says something about the trust people have in the apes in parliament.

[fidodogbreath]

Heaven forfend!

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.

Well, sure; because if more people knew about their opt-out rights, they might exercise them. Can't have that, now, can we?

[Giles C]

Strange about them not wanting to do a Mail shot.

I got a letter from the dvla this morning, informing me that I will be charged when the ULEZ around London expands later this year.

Strange this.

I live over 100 miles from London,

The last time I went to London I got a train

The last time was about 3 years ago.

I have never driven in London (and never want to).

Does this mean people in John O’groats also got the same letter?

[Will Godfrey]

Possible reason

If they send a printed letter, to everyone they can't later claim they never wrote what they did - they can't even realistically clam that 50+ million letters were all faked.

P.S. I'm beginning to wonder if being able to think of such ideas means I'm becoming 'contaminated' with governmentium.

[Lil Endian]

Re: Possible reason

You're not contaminated Will, you're just sane.

I wanted to paraphrase "If you're over 40 and don't hate the government, you never loved it at all." - but the idea of loving a government... Well...

I suppose loving the concept of government is fine, but there're way too many MPs involved in practice!

[eldakka]

Snail mail would be a fool-proof way to inform patients about plans to slurp GP data

I can hear Boris Johnson now: "Challenge accepted!"

[imanidiot]

Opt IN

How in the smegging hell is scheme like this ANYTHING other than Opt-IN! There's no excuse and no reason to make it anything else. And how is this legal regarding doctor patient confidentiality?

[Lil Endian]

Re: Opt-In

Agree 100%

Also, if they went opt-in (as they should) they could mail shot those that don't initially consent. Not sure it'd be much of a smaller group than 100% coverage though. But that might increase the complexity of managing the operation beyond their... comfort level.

[Lil Endian]

Re: Doctor Patient Confidentiality

IIRC they've already stated something along the lines of: even if you opt-out we can still nick your data in times of peril. Coz the children!

[Lil Endian]

Human Rights Voilation?

Universal Declaration of Human Rights

Article 20

2. No one may be compelled to belong to an association.

Associations can include civil society organizations, clubs, cooperatives, NGOs, religious associations, political parties, trade unions, foundations or even online associations. There is no requirement that the association be registered in order for freedom of association rights to apply.

So, can't be compelled to "join" NHS Digital? Bit of a stretch maybe.

[quartzz]

we'll (we have already) only send out paper mail, when we want you to vote for something