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back to article NHS carelessly slings out care.data plans to 26.5 million Brits

A mass mail out of leaflets providing information about NHS England's controversial medical records' plans are being fired off to households across the country from today. The government said in October it was spending £1m on the pamphlets that - as we've previously reported - might be easily mistaken for junk mail as they are …

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I will be opting out....

..NHS England has confirmed that the Better Information Means Better Care leaflet would be posted to 26.5 million household over the next four weeks...

Because I have found that when large databases of this type are made available to researchers, they do not examine them to find out useful general trends, but instead subject them to 'data dredges' designed to provide statistical justification for the current medical fads.

This is how we get central directives to lower salt in foods, ban 'second-hand' smoke, enforce a standard body shape across the country and prescribe everyone over the age of 60 statins. Doctors no longer treat individual patients - they earn bonuses depending on their constituencies level of adherence to NHS norms.

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Anonymous Coward

Re: I will be opting out....

Anyone who does that with data sets and then implements policy based on it, needs "Correlation does not imply causation" tattooed on every available part of their bodies.

I'm not holding out much hope of that happening, or behaviours changing, though.

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Anonymous Coward

Re: I will be opting out....

Maybe if we create a (large) database containing the DNA of all the people who like searching large databases we can find a common genetic link .. And maybe develop a pill .. We call call it 'selecting for the cure'

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Re: I will be opting out....

"This is how we get central directives to lower salt in foods, ban 'second-hand' smoke"

And this is a bad thing?

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Re: I will be opting out....

Sadly, no.

This ( and the previous govt.) do favour the type of "research" that looks for data ( usually correlations and generally fished selectively out of the data pool) that support what it wants to believe, or is kind to its friends' interests.

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Re: I will be opting out....

but how will opting out defeat those nefarious aims?

it could be that your data pulls the stats in the other direction

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More details

If anyone is interested, the official details are at http://www.nhs.uk/caredata with a copy of the leaflet at http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Documents/NHS_Door_drop_26-11-13.pdf.

Details specifically about confidentiality are at http://www.hscic.gov.uk/patientconf.

Or you can ring 0300 456 3531.

Watch out though as if the GP puts all the opt-out read codes on your record some NHS services may start to miss you, like screening programmes, as some are moving to identifying which patients they should be screening though this system. (As an example, the Diabetic Eye Screening programme only screens Diabetics, so needs to know if you have a diabetes code on your record, and if so, your demographic details so they can send you an invitation. If you refuse to let this data make it to them you may miss out on screening - see http://www.hscic.gov.uk/article/3514/Diabetic-retinopathy).

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Terminator

Re: More details

This care.data extraction is nothing about your personal care. The data will never be used to treat you or call you for treatment. It is purely for management and may be given to researchers, including drug companies. Identifiable is a moot point - it will certainly be detailed enough for jigsaw identification.

There is a good, more skeptical, Q&A at http://care-data.info

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Anonymous Coward

FUD

as title

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Re: More details

government blackmail again

nothing new then

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Re: More details

No, the opt out codes will not block screening invitations. Extractions with explicit consent or implied consent for direct patient care - such as retinopathy screening - will not be blocked.

Neil

www.care-data.info

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Anonymous Coward

Re: More details

Sir, you are either an NHS plant to sow FUD or have failed to read thoroughly enough about the topic. As others have said, the care.data data rape has nothing to do with the management of the patient's care whatsoever. It is ostensibly about future planning, and actually about getting data sets that it can sell to pharmaceutical researchers. Those researchers only have to pay peanuts extra to have all the information personally identifiable (full name address and NHS number type identifiable).

You sir might be foolish enough to trust the present government with your medical records, but what about the lot after next? Because once your confidential medical records have left the surgery, there is absolutely nothing you can do about who knows what about you. Despite all the fuss that led up to Levison, we ain't seen nothin' yet. Blagging will become an art form.

The only thing we can sensibly do is opt out. See medconfidential.org for a form to do so without booking an appointment with your GP.

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Re: More details

Not quite... see http://www.hscic.gov.uk/media/12604/Diabetic-Retinopathy-Screening---Customer-Requirement-Summary/pdf/GP2DRS_-_Customer_Requirement_Summary_-_August_2013_(NIC-154590-YG6QH).pdf for the full details of the Diabetic Eye Screening extraction though GPES (part of care.data); specifically you want Appendix C onwards (page 28) for details of all the consent read codes and data extracted.

If you are interested in the specific Information Governance, Confidentiality and Consent details for the specific example, they can be found at http://www.hscic.gov.uk/media/12606/Diabetic-Retinopathy-Screening---Information-Governance-Assessment/pdf/GP2DRS_-_HSCIC_Information_Governance_Assessment_-_August_2013_(NIC-154590-YG6QH).pdf (but note that it is 12 pages long...)

To be perfectly clear to people who know the specifics, the Diabetic Eye Screening programme is a non-mandatory request made under section 255, so opt out is possible if a GP practice records certain opt-out codes.

To be honest, one of the biggest issues with opt-out that no-one seems to have noticed is that if anyone changes GP surgeries, they may have to opt-out all over again, as even today the automated transfer of records through the GP2GP (part of the old NPfIT) does not cover anywhere near all GP re-registrations - many still require posting printouts around the country. Whilst a dissent code should hold across GP registrations, there are a number of cases where this may not happen and the patient would have no idea.

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Re: More details

So in other words "let us sell your data or you may die"

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Re: More details

First I thought 'You're wrong', then I read the GPES spec you kindly link to.

I can see there are specific opt-in opt-out codes for diabetic patients to opt in/out of this extract. I can't tell how these interact with the care.data opt in/out, as it doesn't seem to be mentioned in the spec, or in care.data information I've seen.

Considering we're already hitting problems at the coal face with TPP EDMS opt n/out versus SCR opt in and opt out, this can only get more complicated as time goes on, leading to more errors.

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ANOTHER opt-out?

Why can't the fact that I've already opted out (twice, in different forms) to the doomed NHS Spine system still stand? How many times will they simply rename it and then get us to opt out all over again?

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Re: ANOTHER opt-out?

You will have to continue opting out until you give the "correct" answer.

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GP's Opening Hours

"Equally important is that everyone knows that they have a choice and can raise an objection by simply talking to their GP."

When am I supposed to find time to have this chat with my GP. His opening hours clash with my work hours

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Unhappy

Re: GP's Opening Hours

"When am I supposed to find time to have this chat with my GP. His opening hours clash with my work hours"

Well you could learn to play golf...

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Re: GP's Opening Hours

You know more than your GP probably and there has been no extra time given by the NHS to give advice on this. If you want to opt out just email or write to them. There are a few forms knocking about (the NHS England has cleverly not produced an official form, in case people thought that they needed one).

Our local CCG produced a form. Nothing specific to Swindon in it. You can download it from http://www.whalebridge.nhs.uk/images/PCDpermission.rtf

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Re: GP's Opening Hours

Exactly. In my case you are lucky if you get to chat to a real person.

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Anonymous Coward

Re: GP's Opening Hours

My GP is a woman and most certainly not part of the Golf Club set because she has not long had twins.

You should really think about moving to a GP Practice that have better opening hours. Mine even has a surgery on a Saturday Morning.

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Re: GP's Opening Hours

His golf-playing hours clash with my work hours as well.

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Re: GP's Opening Hours

The chat will probably be like the MMR chat where the "Care Professional" nearly laughed at our concerns despite it being published in every national newspaper.

As someone said above you will be canvassed again & again until you give the right answer.

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Re: GP's Opening Hours

No need to talk to a GP .. just send them a completed copy of one of these 'community produced' following opt-out forms (as no 'official' opt-out form seems to exist .. what a surprise!) ...

http://medconfidential.org/how-to-opt-out/

http://www.blackburnroadmedical.co.uk/wp-content/uploads/2013/10/Care-Dot-Data-Fact-Sheet-Opt-Out-Form.pdf

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Re: GP's Opening Hours

@ Synonymous Howard

Thanks for the useful links.

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Anonymous Coward

Re: GP's Opening Hours

@WhyNot: That's probably because all the concerns printed in the national newspapers turned out to be complete cobblers being peddled by an incompetent researcher, as is now well known.

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Re: GP's Opening Hours

"incompetent researcher"

In fairness to Undoctor Andrew Wakefield, his reserach was found to be fraudulent, not incompetent.

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Re: GP's Opening Hours

well how did the public know that at the time?

As has been seen the level of incompetence and illegal actions within stafford etc it was entirely reasonable that one should suspect they were wrong.

we can all be experts in hindsight.

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Re: GP's Opening Hours

Email them. Most GP's surgeries have an email address.

Technology: not just for evil.

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No Junk Mail

So any address with "No Junk Mail" on their box won't get these as the postie is only able to deliver post that has a named recipient? Who thought this was a good idea?

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Flame

Re: No Junk Mail

So any address with "No Junk Mail" on their box won't get these

Not my experience. I have just such a notice (a proper plastic plaque with embossed printing on no less) attached to the flap but it makes no difference. I've even seen leaflet toting wags stop, look at it, then go ahead and put the crap through my letterbox anyway.

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"Some critics have argued that medical records could end up in the wrong hands WHEN data mishaps and security blunders occur."

Fixed that for you.

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Anonymous Coward

A mass mail out of leaflets

what, AGAIN?!

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As with all these mass mailings

I fully expect to either :-

1) Get nothing at all

2) Get at least 10 copies all delivered at once.

I fully expect the former.

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Re: As with all these mass mailings

Well, you wait ages, thinking that you've gotten away with 1), then 2) happens.

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Anonymous Coward

Watch this video

In particular Ross Anderson's contribution in which he mentions care.data and previous SCR2008 opt-outs.

http://www.lightbluetouchpaper.org/2013/12/31/crypto-festival-video/

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Right... so...

Luckily being of good health I very rarely have to visit my GP - I'm not even sure which is actually mine anyway.

But what they are saying is that I have to arrange an appointment - wait about 2 weeks for that appointment - only to not actually discuss anything medically related at all, but just to state that I want to opt out of this farce?

Is there not an easier way?

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JDX
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Re: Right... so...

If it takes you two weeks to get an appointment, the leaflet is the least of your worries.

Have you geniuses not even considered simply phoning the surgery and asking the receptionist if they can put this on file for you, or give you a form to post?

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I'll be opting out

For one thing, I know for a fact that there was at least one typo in my medical records. It was fairly insignificant, merely showing me to be a few days older than I am but I don't know how many more there are.

And another thing: the name of the town is misspelt on the surgery's web site. I've told them several times but they appear to have better things to do than correcting it. It doesn't give me the warm feeling that I'm in the hands of professionals.

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better information - better treatment, yeah right

GPs supposed to be professional not merely well qualified (professionalism rant, passim) so if they were to actually use the information to come up with a patient-centric diagnosis there would at least be a benefit to weigh up.

My experience on the rare occasions I visit my GP is that it's up to the patient to present properly in order to get a half-decent diagnosis or risk being fobbed off with a diagnosis based on the obvious symptoms.

I'll spare you the details but on that occasion the real problem turned out to be my new bicycle saddle (there's a reason padded is bad - my subsequent diagnosis) rather than my GP's "it's your time of life, so here's a prescription and a print out"

The point being, that Hayek's aphorism that there are three kinds of money, my money our money and your money, which one do I look after most carefully? probably applies to health too,

Give me my records to look after, I'm the only one that cares about me.

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Happy

Re: better information - better treatment, yeah right

I'll spare you the details but on that occasion the real problem turned out to be my new bicycle saddle (there's a reason padded is bad - my subsequent diagnosis)

Just curious -- what kind of saddle did you switch to? (I got a Brooks a year ago & it's been great.)

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Anonymous Coward

Weren't GPs Supposed to do this?

I'm pretty sure I remember they were, although I didn't get anything - I guess it didn't work out: http://www.pulsetoday.co.uk/your-practice/practice-topics/it/eight-weeks-to-inform-patients-their-data-is-going-to-be-harvested-gps-warned/20004562.article#.UssL13NFAm8

Would like to know how much access insurance companies/potential employers would have to the anonymized data and how many NHS/government employees/contractors would have access to the whole lot.

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Devil

In other NEWS: 15 Terabyte USB drive developed

Because, otherwise, you'd never fit such a large database on a lost USB drive...

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If they are anything like ATOS

None of the information they hold on me will be relevant or accurate.

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Trollface

Re: If they are anything like ATOS

....and how is that rash coming along?

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Re: If they are anything like ATOS

It's not stopping him from working.

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Opt out option is laughable - there is no form - not any form of proof that you asked not to be included, zero, nada. We're all in, like it or not.

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Anonymous Coward

There's a really tricky thing here. The idea that data's identifiable I suspect is less important than the scaremongerers make out. The law already prevents misuse of confidential data; any private organisation found to be basing insurance premiums on ill gotten information can be slammed into collapse - and its our responsibility as the public to make sure that outrage is vehement enough that it will not be tolerated. So many of our ailments are visible for all to see; that the ones that aren't are on a central database is so staggeringly sensible its a crime that $12bn government investment failed to produce a workable spine. A knowledge of a patient's history is what I spend the vast majority of my time with a patient trying frantically to discover. It is crucial with an unknown patient in ED, who sits, close to death, with a greater or lesser chance of communicating the salient snippets of information to me which more often than not expedite the journey to a correct diagnosis. It makes me so angry and frustrated that with the NHS slipping close to failure, simple, universal patient databases that could yield enormous efficiency gains are repeatedly thwarted by opponents with little insight into the risks or benefits. Jigsaw?! why bother?!! most data agencies will be able to better target your ailments through the inevitable google searches you make to find out what's going on with you!! Help the NHS help you and look for benefits not just the next conspiracy theory. I appreciate that care.data is about the big data side of things, but that correlation is not important for future medical health is ridiculous. And I'd fairly firmly argue that not using 60m patient's worth of available information, potentially one of the most powerful databases in the world, is criminally negligent. We could be world leaders in big health; it's precisely because of knee jerk opt outs that we underachieve so resoundingly.

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