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Are you allowing your medical records to be hoovered up and shared outside the NHS?, If you don't opt out now, they will be (England only)
What are you doing about care.data?
What are you doing about care.data?
I'm happy with this use of my medical records, and I'm staying opted in [ 6 ] ** [10.17%]
I'm unhappy with this, and I'm opting out [ 27 ] ** [45.76%]
I'm going to spread the word so that people know what's going to happen if they don't do anything [ 11 ] ** [18.64%]
Never heard of it! [ 10 ] ** [16.95%]
I'm delighted to say that I don't live in England, so this doesn't apply to me! (Yet...) [ 5 ] ** [8.47%]
Total Votes: 50
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Fredd
post Tue, 28 Jan 2014 - 17:18
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This is an entirely off-topic thread, except in that it involves government behaving like scumbags (again).

In the next few months the full medical records of every NHS patient in England will start being hoovered up directly from GPs' computer systems by an organisation called the Health and Social Care Information Centre. They "share" this information (including selling it), sometimes anonymised, sometimes not, not only within the NHS but also with outside organisations such as researchers and pharmaceutical companies. For your convenience the government has changed the law so that the Data Protection Act doesn't allow GPs any say in this and you will automatically be opted in unless you object.
  • The NHS is sending out an extraordinarily thin "fact" sheet titled "Better information means better care" - not to you individually, but in amongst the Royal Mail junk mail leaflets, which you may just have thrown away. It doesn't include any opt-out form.
  • For an alternative, far more comprehensive, and sceptical, view of this, a Hampshire GP has set up a simple website. Unlike the NHS information, it includes an opt-out form.

Whether you are happy with this and think it's a great idea, or think it stinks to high heaven, I've met so few people who are aware of it that I think it's worth doing everything possible to let people know what's happening and what they can do about it. Once the data's uploaded you have no control over it, so you need to decide now.


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post Tue, 28 Jan 2014 - 17:18
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Fredd
post Thu, 13 Feb 2014 - 14:32
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I think the Royal College of GPs is kind of missing the main point - a better explanation of all the benefits the medical establishment's anticipating isn't going to help, it's the lack of privacy safeguards and control over our individual, extremely personal, data that's the problem.

If all the data was properly anonymised at source, and individuals could retrospectively opt out and have their data removed, then I suspect most people would be OK with it. Which really makes me wonder why they've been so hell-bent on forcing through a scheme that doesn't have those fairly simple safeguards.


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Fredd

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Unzippy
post Mon, 17 Feb 2014 - 13:08
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Front page of the Telegraph
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Fredd
post Tue, 18 Feb 2014 - 18:44
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The backlash against this has now prompted what some of us more cynical observers regard as a standard Government response - delay the implementation by 6 months in the hope that people will have got fed up with the subject by then. No indication that any change is being considered, just "better communication" of all the wonderful advantages.

The BBC was even pushing the official line earlier that this scheme would enable the NHS to improve cancer outcomes to typical European levels - a plausible argument unless you pause to wonder how those Europeans managed that without a similarly intrusive scheme.


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Fredd

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minotaur
post Tue, 18 Feb 2014 - 19:32
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QUOTE (Fredd @ Tue, 18 Feb 2014 - 18:44) *
The backlash against this has now prompted what some of us more cynical observers regard as a standard Government response - delay the implementation by 6 months in the hope that people will have got fed up with the subject by then. No indication that any change is being considered, just "better communication" of all the wonderful advantages.

The BBC was even pushing the official line earlier that this scheme would enable the NHS to improve cancer outcomes to typical European levels - a plausible argument unless you pause to wonder how those Europeans managed that without a similarly intrusive scheme.


Yeah. The BBC were almost tying themselves in knots acting as an NHS mouthpiece.


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bama
post Tue, 18 Feb 2014 - 19:40
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QUOTE
The BBC was even pushing the official line earlier that this scheme would enable the NHS to improve cancer outcomes to typical European levels - a plausible argument unless you pause to wonder how those Europeans managed that without a similarly intrusive scheme.

Fredd, as you know thinking for yourself leads to conflict with a lot of media/hmg fairy stories. The only question is how high is the percentage...


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Which facts in any situation or problem are “essential” and what makes them “essential”? If the “essential” facts are said to depend on the principles involved, then the whole business, all too obviously, goes right around in a circle. In the light of one principle or set of principles, one bunch of facts will be the “essential” ones; in the light of another principle or set of principles, a different bunch of facts will be “essential.” In order to settle on the right facts you first have to pick your principles, although the whole point of finding the facts was to indicate which principles apply.

Note that I am not legally qualified and any and all statements made are "Reserved". Liability for application lies with the reader.
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Gan
post Wed, 19 Feb 2014 - 08:40
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Just watched an interview on BBC Breakfast

"let their information be used for the common good"
"it's going to save lives"
"I've discussed this with lots of people that have agreed to participate"
"will provide more time so that people can make a considered decision"
"of course there will be some that are very concerned about privacy"

So much for a balanced view
Nobody to challenge it at all and no mention of the commercial organisations that are the main concern
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Fredd
post Wed, 19 Feb 2014 - 11:38
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Nice soft interview with Tim Kelsey, the NHS National Director in charge of this fiasco, on BBC R4 Today programme this morning (1:52:10 in); a splendid example of the arrogance of government.

The gist of it was that the communications to date haven't been a failure, but they'll be talking to their "colleagues" and "partners" (that doesn't seem to include us citizens, BTW) about how best to communicate the myriad advantages of this scheme over the next 6 months. He's not keen on individually addressed letters to patients, though, since his media marketing advisers say they're not very effective (not in persuading people to buy double glazing, no). Presumably all the social media activity he mentioned was just the thing, according to those advisers. However, despite the fact that this is apparently an important national "debate", there's no question the scheme's going to happen in the autumn; this is just a public awareness campaign.

Perhaps his media advisers should advise him that with his refusal to engage with anyone expressing contrary opinions he's coming across as an arrogant *****.


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Fredd

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minotaur
post Wed, 19 Feb 2014 - 11:42
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Our policies are never wrong or misguided - we just need to browbeat communicate better.


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Gan
post Wed, 19 Feb 2014 - 11:48
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I can remember hearing that "need to communicate better" line in the 70s
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delusional drive...
post Thu, 20 Feb 2014 - 14:18
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QUOTE (Gan @ Wed, 19 Feb 2014 - 11:48) *
I can remember hearing that "need to communicate better" line in the 70s


80's, 90's, 000's ......


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Fredd
post Thu, 20 Feb 2014 - 14:47
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If you want to know how much (or how little) our private medical records are being sold for, enjoy. For some reason providing personally identifiable information is more expensive than pseudonymised information - which seems odd just for a slightly different database query. It's all dirt cheap, though.


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Fredd

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bama
post Thu, 20 Feb 2014 - 16:38
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pile it high
sell it cheap

transaction numbers will be LARGE
and ongoing....


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Which facts in any situation or problem are “essential” and what makes them “essential”? If the “essential” facts are said to depend on the principles involved, then the whole business, all too obviously, goes right around in a circle. In the light of one principle or set of principles, one bunch of facts will be the “essential” ones; in the light of another principle or set of principles, a different bunch of facts will be “essential.” In order to settle on the right facts you first have to pick your principles, although the whole point of finding the facts was to indicate which principles apply.

Note that I am not legally qualified and any and all statements made are "Reserved". Liability for application lies with the reader.
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ManxRed
post Thu, 20 Feb 2014 - 16:46
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As Sandi Toksvig said on the News Quiz, if they want to share our details but only make it available to other NHS professionals just get GPs to write them out in the same handwriting they use on prescriptions.


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Incensed1
post Fri, 21 Feb 2014 - 18:03
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I don't get what the fuss is about. Or, rather I do.

This seems to me a perfectly rational move and I'm happy to let the NHS have me on a database outlining all my medical records, as I have nothing to hide & everything to gain.

Sound idea. Imagine the scenario...... one has a heart attack, or suddenly collapses in the street or is involved in a traffic accident. You're rushed to hospital for emergency treatment, unconscious (as happened to me last year) and prior to emergency surgery or medication, the staff can access information on whether you're diabetic, HIV-positive, have leukaemia, heart disease, life-threatening allergies & a whole raft of other medical conditions which immediately inform the consequent medical procedures. Otherwise, you're just Joe Soap on a stretcher.

I think this is a vital step forward for the NHS and will save many lives.

Now, I recognise that there's a right-wing agenda running in the opponents of this move & within this thread, based on the usual American-funded anti-NHS sources: 'Nanny State', 'Socialist', 'Personal Freedom', 'BBC Lefties', 'NHS is broken' & other "Daily Mail"/"Telegraph" standard memes, but rationally, the consequence of anyone's medical records being hacked or 'sold to private firms' would merely, conceivably but improbably, result in the odd mailshot from a Nigerian trying to sell me heart drugs or Statins, which I already get free on the NHS.

I can live with that, given the potential catastrophe should I ever need emergency treatment & the responders having absolutely no idea of any pre-existing conditions.

This post has been edited by Incensed1: Fri, 21 Feb 2014 - 18:06
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Fredd
post Fri, 21 Feb 2014 - 18:11
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QUOTE (Incensed1 @ Fri, 21 Feb 2014 - 18:03) *
Sound idea. Imagine the scenario...... one has a heart attack, or suddenly collapses in the street or is involved in a traffic accident. You're rushed to hospital for emergency treatment, unconscious (as happened to me last year) and prior to emergency surgery or medication, the staff can access information on whether you're diabetic, HIV-positive, have leukaemia, heart disease, life-threatening allerrgies & a whole raft of other medical conditions which immediately inform the consequent medical procedures. Otherwise, you're just Joe Soap on a stretcher.

What you don't seem to have appreciated is that this care.data scheme is not the same as the Summary Care Record, which is what is (unless you opted out from it previously) shared between various bits of the NHS to ensure that you receive appropriate care in the circumstances you described. Personally I have no problem with the Summary Care Record as that does affect my care, and I suspect the same is true of most people who are wary of the care.data scheme.

The data gathered under care.data will not be available to NHS front-line staff dealing with your care; it's - being generous - intended as a research tool, and will have nothing to do with your clinical care.

I suggest you read some of the links at the start of this thread so that you understand the difference.


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Fredd
post Mon, 24 Feb 2014 - 12:31
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Remember those very recent assurances that concerns that our personal medical information would be flogged to, amongst others, insurance companies, were all just "scaremongering"? Think again.

QUOTE (Daily Telegraph @ 24 February 2014)
The medical records of every NHS hospital patient in the country have been sold for insurance purposes, The Telegraph can reveal.

The disclosure comes days after controversial plans to extract patient data from GP files were put on hold, amid concerns over the scheme.

Those in charge of the programme have repeatedly insisted that it will be illegal for information extracted from GP files to be sold to insurers, who might seek to target customers or put up their prices.

However, a report by a major UK insurance society discloses that it was able to obtain 13 years of hospital data – covering 47 million patients – in order to help companies “refine” their premiums.

As a result they recommended an increase in the costs of policies for thousands of customers last year. The report by the Staple Inn Actuarial Society – a major organisation for UK insurers – details how it was able to use NHS data covering all hospital in-patient stays between 1997 and 2010 to track the medical histories of patients, identified by date of birth and postcode.


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Unzippy
post Sun, 20 Apr 2014 - 13:41
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HMRC - bandwagon - jump

http://www.bbc.co.uk/news/uk-27086401
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c2k
post Wed, 6 Jul 2016 - 23:21
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Care.data database now scrapped smile.gif

https://www.theguardian.com/technology/2016...medical-details
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Fredd
post Thu, 7 Jul 2016 - 05:55
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QUOTE (c2k @ Thu, 7 Jul 2016 - 00:21) *
Care.data database now scrapped smile.gif

About time, although the previous efforts to patch up this rotting corpse and resuscitate it suggest that they'll be back. Hopefully they'll put robust privacy controls at the heart of the next effort, and be open about what they're doing so that people can make an informed decision. A good starting point would be to recognise that an individual's medical history belongs to that individual, not to the organisation that happens to have been paid to treat them.

Interesting to note that profiles on Wikipedia and LinkedIn of Tim Kelsey, the driving force behind this scheme who's now working in the private sector in Australia, make no mention of a pioneering flagship project like care.data. rolleyes.gif


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Fredd

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