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back to article NHS preps spammy mailshots advertising 'BIGGEST medical data grab in HISTORY'

GPs will no longer carry the sole burden of telling patients that their medical records will be shared across the NHS, after it was confirmed today that millions of households in England will receive a leaflet explaining the controversial plan. NHS England has splurged £1m on what one critic described as a junk mail drop, which …

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woah!!

Costing us EACH ... EIGHT PENCE???

Well there goes my plans to buy an.. .ummm... hang on, I'll get back to you on this.

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Coat

Re: woah!!

2 x 1p sweets?

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Anonymous Coward

I totally disagree with this database. If you don't opt out before it starts you cannot opt out later. And the fact you are automatically in the scheme is a %&*#ing disgrace.

The NHS will not be able to keep this data secure. They deal in health not IT. The data is worth a fortune outside the NHS and in times when people are desperate for money (either at a personal or trust level) you can guarantee this data will get out at some point.

Insurance companies would love this, either legitimately or via the backdoor. Imagine the profit potential if you can remove some business risk.

All in all a bad idea - I've already opted out and I suggest you all do too.

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Anonymous Coward

Not just insurers, employers and investors might be interested in an change in health.

They employ a private investigation agency who know people who know people and for a large lump of cash somehow the information works it's way out. We've already seen from the phone hacking how police were taking bribes or even cash retainers to carry out searches and provide dirt or addresses, what the CPS was planning, details of celebrities relations or friends.

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Anonymous Coward

Easing the slide to piratisation.

All the data can be handed over to the likes of Branson at some date in the near future.

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Of course the NHS will keep this data secure.

If it leaks then it is of no value to sell it to pharma, health insurance, travel insurance, pension companies, banks etc.

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Anonymous Coward

Re: Easing the slide to piratisation.

Errr, I've got bad news for you. Your records are already held by a private company. Your GP's practice is owned by themselves, not the NHS.

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Anonymous Coward

Re: Easing the slide to piratisation.

Already there!

My GP is in the Home Counties. My medical records are on a server in Pudsey. Of course I trust SSL/TLS. Of course I trust the for profit contractor to whom my GP has been forced to sub contract the keeping of my records. Of course I wasn't asked.

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Another big opt out

I suppose that means the result was wrong last time, so it's time to opt-out again.

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Flame

what could possibley go wrong?

Well, just about everything.

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Doesn't seem to be a way to opt out if you're currently in the UK.

Meanwhile, some of us have moved out of the UK leaving somewhat extensive records in the UK health databases. Because of the way they're doing it, I'm not being given any chance to opt out. All emails and snail mail letters to the appropriate agencies have been met with a resounding silence (apart from the one auto-response a while ago saying they'll let me know).

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Anonymous Coward

Re: Doesn't seem to be a way to opt out if you're currently in the UK.

@raving angry loony

Presumably you meant you aren't in the UK, if so why do you think we care whether you opt out or in? You wont be using the NHS will you.. unless you are just holding an address here so you can come hobling back when the shit hits the fan in paradise.

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Anonymous Coward

@ AC 15:13

Ooops careful there, your bitterness and envy is showing, is your job in burger king getting you down today?

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Lithuanians

I like the Lithuanian system for government records. You can access all the records the state holds about you online with a chip and pin card. People with the right authority access and update your data when needed, DVLA, GP etc., etc., but cannot do so without leaving a signed footprint behind. Anyone in power snooping without good reason leaves a dirty great skidmark behind. Simple. Modern. Effective. Can you imagine the government, the Met, GCHQ, not to mention the DWP, trying to roll that out in Britain?

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Anonymous Coward

Re: Lithuanians

.. well sure, I can imagine it. But then I can imagine lots of unlikely things.

Which is a shame, because having a visible audit trail for the data access would reassure me considerably.

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Unhappy

Re: Lithuanians

"I like the Lithuanian system for government records. "

Funny you should say that.

Lithuania has a total population of about 5 million people.

And no IT infrastructure when the Soviet Union pulled out.

so more or less a green field site with a very clear idea of what state snooping could do for privacy and freedom.

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Joke

opt out link?

As a public service, could someone post an opt out link?

A bit tongue in cheek, as I'm *still* trying to enroll in the healthcare.gov system....

I wonder which will lose my data fastest?

P.

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Re: opt out link?

tinyurl.com/cdoptout

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Anonymous Coward

Re: opt out link?

Am I the only one who refuses to click tinyurl's ? Those who click 'em are idiots, no ifs, buts or maybes.

So here you are:

http://www.lmgtfy.com/?q=nhs+opt+out&l=1

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M7S
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Re: opt out link?

Direct link to the form http://systems.hscic.gov.uk/scr/staff/aboutscr/comms/pip/optout.pdf

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This post has been deleted by its author

Re: opt out link?

"Am I the only one who refuses to click tinyurl's ? Those who click 'em are idiots, no ifs, buts or maybes.

So here you are:

http://www.lmgtfy.com/?q=nhs+opt+out&l=1"

Then you'll end up with the wrong opt out.... - in this case, the Summary Care Record, not care.data

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Re: opt out link?

"Direct link to the form http://systems.hscic.gov.uk/scr/staff/aboutscr/comms/pip/optout.pdf"

No - this is the link to the Summary Care Record, not care.data

You do not have to fill in a form to opt out of care.data (or the SCR for that matter), there is no obligation to put your objection in writing. You can email your surgery if you want, or just tell a receptionist or your GP.

Please don't make an appointment with your GP just to opt out, whatever you do!

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Who is the NHS contracting to store this info ?

Because if it is a USA company (or has ties to the USA) then it will be grabbed by the NSA using the Patriot Act. I don't have any embarassing diseases, but I still don't want the USA gov't noseing around in my privates.

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Unhappy

Re: Who is the NHS contracting to store this info ?

"Because if it is a USA company (or has ties to the USA) then it will be grabbed by the NSA using the Patriot Act. I don't have any embarassing diseases, but I still don't want the USA gov't noseing around in my privates."

It will make a nice companion ot the census data that Lockheed Martin collected last time (and the time before that) round.

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Re: Who is the NHS contracting to store this info ?

It's ATOS.

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Anonymous Coward

Re: Who is the NHS contracting to store this info ?

BT run the system that stores all secondary care information, they would be a good bet for this attempt to slurp primary care as well.

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As long as....

They keep the database for themselves and don't sell access to it to anyone. As I wouldn't want the world knowing about my "light bulb" moment.....and I don't mean having an idea!

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Anonymous Coward

Re: As long as....

They won't sell it. They will give it away effectively [e.g. Royal Mail pensions liability retained by taxpayer to increase profitability], just as with all piratisations.

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FAIL

"No nurse, he said he had huge spectacles"

I am somewhat torn on this issue. On one hand I can see the benefits of a central database of medical records and the sharing of those based on clinical necessity but I am not confident that is all it will be used for or that my records will remain confidential.

I wasn't overly impressed by it being opt-out and it is ridiculous that people cannot ever opt-out having been opted-in, and opt-out seems to have been deliberately made as difficult as possible.

Any such database should be to further an individual's best interest and the way this is organised suggests it primarily serves other purposes. That should worry everyone.

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Re: "No nurse, he said he had huge spectacles"

This database is not designed for clinical necessity or serving you.

It is for selling the genetic and health records of the population to drug companies. (and probably insurers, employers, etc)

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Anonymous Coward

assurances are in place about anonymised storing methods

A few years ago I worked as a contractor writing an update to an NHS IT system. The test system had patient data in it which I assumed was test data created for the purpose or suitably anonymised real data. It was only after I'd been there for a couple of weeks and was testing a print function that the manager overseeing the project approached me and quietly told me to be sure to dispose of the printouts in the bins for shredding because the data was real and had never been anonymised. They relied on it being a few years old and from a different health authority to make sure I didn't stumble upon someone I knew.

So I would not trust anyone from the NHS claiming data will be anonymised.

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Roo
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FAIL

Presumably medical professionals will set aside the Hippocratic oath every time they use this system because it is a certainty that the NSA & GCHQ will recover the information via a backdoor and intercepting network traffic.

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It;s very sad ....

that we can't trust the government to run this correctly and people will understandably wish to opt-out.

My sadness comes from the fact it could be so beneficial, identifying drugs that are better at treating disease, showing side effects of treatments, showing which treatments are more effective, reduction in health care costs, the list goes on.

But as noted above, who the F*&# is going to trust a UK government with this! The benefits should out weigh the risks but sadly, they won't.

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Unhappy

Re: It;s very sad ....

It is very sad.

I happen to be involved with a charity which goes to great lengths to collect audit information from GP surgeries and clinics to evaluate the effectiveness of care and publish the results to enable people to see what level of care their region receives compared with the rest of the country.

This data is also useful for medical research, and it is a nightmare trying to ensure that data can go to worthy UK researchers but not be flogged off to pharma companies in the rest of the world (mainly USA) for commercial gain.

UK medical records are (despite all the shortcomings of the NHS) far more reliable and comprehensive than those in most other countries because we have a <deep breath> National Health Service - which most countries don't. So we have a national data set for over 50 million people. Priceless.

Would you trust any government with this, when a short term funding crisis comes along and Big Pharma starts to use the carrot and the stick?

No - me neither.

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FAIL

*Theoretecial* benefits versus practical implementation f**kups. Hmmmm.

Decisions decisions.

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I'll keep an eye on my junk mail from now on

I have two comparatively mild but chronic diseases, one of which requires daily medication. I'll let El Reg know if I start to get any targeted mail that seems to imply any knowledge of my medical condition. It would be useful if other commentards in a similar situation could do this.

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Anonymous Coward

Re: I'll keep an eye on my junk mail from now on

Spot on. As I have Leukaemia, PMR and a few other things that are age related I too have to take medication daily. My cancer can strike quickly so if I'm away at the other end of the country and get take ill I would find it rather comforting to know that the medics treating me had access to all my medical records.

I guess that once you get to a certain age, this sort of thing becomes less of an issue.

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Facepalm

Re: I'll keep an eye on my junk mail from now on

"I'll let El Reg know if I start to get any targeted mail that seems to imply any knowledge of my medical condition."

I think it's already leaked. I'm getting diet pill and viagra spam every day!

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Am I the only one..

Am I the only one that thinks the problem is easily solvable?

If the purpose is to alert people that their medical information is stored, then it seems the best way forward is to have patients give that consent at the time medical services are rendered. In other words, just have them put their signature on yet another form while at the doctors office.

Simple. No mailings required. Each doctor office prints the form which reduces the print burden radically. Further this would be opt in, thereby makin sure only those that actually want to be in the system are.

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Unhappy

"even if assurances are in place about anonymised storing methods."

With enough data points*, 'anonymised' quickly becomes 'identifiable'. The potential for abuse is mind boggling. One of the first results would be the disenfranchisement of a large -and already suffering- part of society. No jobs, no life insurance, no credit, ...

What could possibly go wrong?

While I understand the advantages of this 'big database' approach for improving healthcare, such a system should be -aptly- designed from the ground up with confidentiality and security in mind. Which sadly seems to be not the case. Sigh...

* As would be the case for chronic patients and people who have been seriously ill.

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Re: "even if assurances are in place about anonymised storing methods."

Apparently the plan is to link the currently separate records using NHS number (your unique identifier in the NHS database) date of birth and post code. Documentation I've read within the NHS suggests that researchers using the data would be able to, in "exceptional"* circumstances, identify individuals. Doesn't sound much like anonymisation to me.

Perhaps they'll call me to let me know I have a tin-foil allergy. Or perhaps I'll opt out.

Mephistro, as you suggest, there'll be a great many data points that would make de-anonymizing easier but I suspect that with the increasing value of this kind of data, someone somewhere will create a tool to do just this. If a list of NHS numbers with names attached ever leaked...

*when they feel like it.

SD

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Re: "even if assurances are in place about anonymised storing methods."(@ Soap Distant)

Apparently the plan is to link the currently separate records using NHS number (your unique identifier in the NHS database) date of birth and post code.

Holy Mother of Christ!!!

With that data they have no frecking need to know the names!.

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The NHS just keeps on ignoring the DH's rules...

Anyone who thinks their NHS data will be secure is living in cloud cuckoo land. The NHS blatantly ignores the Department of Health's rules whenever it suits them.

The DH banned the use of expensive 084 telephone numbers by the NHS way back in 2009.

http://news.bbc.co.uk/1/hi/health/8251290.stm http://goo.gl/ps05rw

There was widespread non-compliance, so the DH had to issue clarifications in February 2012.

https://www.gov.uk/government/publications/the-use-of-084-numbers-in-the-nhs-further-guidance

However, four years after the original ban many GPs' surgeries and NHS hospitals and are still using these numbers on their websites and in appointment letters to patients. Calling them now costs up to 41p/minute.

http://www.mtw.nhs.uk/your-visit/getting-to-maidstone-hospital.asp

https://www.nhs.uk/Services/hospitals/Services/Service/DefaultView.aspx?id=91892

Last August, the ASA upheld a complaint against NHS Choices. They were told to include clear pricing information about the cost of calling the rip-off numbers the NHS isn't allowed to use.

http://asa.org.uk/Rulings/Adjudications/2013/8/NHS-Choices/SHP_ADJ_232957.aspx

All that's happened is that NHS Choices now make the false claim that the Call Set Up fee is zero pence, when it's really 15p!

http://goo.gl/8sGvy7

If the DH can't even obtain compliance when the NHS's defiance of the rules is so publicly visible, there's no way that they'll be able to ensure that the NHS will keep patients' personal data secure, especially when the public can't check what's really going on.

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The assumption appears to be that opting out is the safest option. As things are at the moment, doctors in secondary care will essentially know nothing about you when you're admitted to hospital. This problem needs to be addressed. Oh, and good luck with your tin-foil allergies - you may find that your life ends before that particular intolerance becomes an issue.

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@Pan_Handle

Medical staff treating you in GP surgeries, hospitals, A&E and out-of-hours centres will not use, or be able to use, the care.data database or any of the information stored within.

It's purposes are for "secondary uses", not direct medical care.

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@pan_handle

"As things are at the moment, doctors in secondary care will essentially know nothing about you when you're admitted to hospital. This problem needs to be addressed. Oh, and good luck with your tin-foil allergies - you may find that your life ends before that particular intolerance becomes an issue."

This isn't about the Summary Care Record that different medical organisations can access - I don't think the SCR is a bad thing tbh, if nothing else, it might save A&E staffers time asking your name and DOB repeatedly. Others with more sensative medical conditions may disagree of course.

This is about a "pseudonynimised" primary care data set that gov wants to flog to pharma research. Entirely different use and an entirely different commercial domain it's being flogged to.

SD

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Anonymous Coward

I'm a GP

I'm opted out.

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