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Fredd
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.
sgtdixie
Thanks Fredd
Wongsky
I vaguely recall reading about this a while back.

Truth be told, I wasn't that concerned - but I realise that could be very conditional. I suppose it rather depends on what safeguards are in place, and the extent to which the data could be passed / released, really.

Think I'd be interested in other comments, though - so will let the matter percolate a little, and see if there's some persuasive argument to make me firmly one way or the other about it.
Gan
I'd been aware of it for quite a while before the thin leaflet arrived yesterday

What did come as a surprise was learning that the pseudomised data only removed names and didn't strip out other unique identifiers such as NHS number
I'm going to be opting out

Might start exploring the options of regarding the NHS as a last resort if I can get treatment at walk-in centres or across the channel

Getting a lot of grief from Mrs Gan because I've refused to see my GP since her report to an insurance company has stuffed me for getting cover again
No wonder her surgery has one of the three lowest ratings in the Midlands

bama
Good post Fredd.
the more people that know about this the better.
Fredd
QUOTE (Wongsky @ Tue, 28 Jan 2014 - 17:50) *
I suppose it rather depends on what safeguards are in place, and the extent to which the data could be passed / released, really.

The safeguard is that an "independent" Confidential Advisory Group (CAG) advises the Secretary of State whether in their opinion there's a "defined medical purpose". If they say there is, then everything's hunky-dory and your personally identifiable information (if that's what was requested) can be released. Since the CAG is based at the NHS Health Research Authority one might think this is all a bit cosy and that they're rather likely to think the request is justified.

This isn't a theoretical situation: HSCIC already holds data from secondary care sources (eg hospitals), and quite regularly agrees to the release of personally identifiable information, alongside clinical information.

Incidentally, the site that link's to is a site for health professionals in General Practice; it's interesting what a hot topic this obviously is with them, considering how little information the public's been given.
tapas600
Timely alert, Fredd, well done.

I just had to rush a few weeks back to my local GP surgery to make sure me and my Mrs are not opted in. The current crop of politicians who are in charge of this (as Ministers of HM Government) are total slime, set up this fire sale of private data.
axeman
Cheers Fredd, We are opting out
Dwain
Thanks Fredd, I and all of my family are opting out, who knows what this information could be used for in the future, we all know only to well how politicians only tell you what they think you need to know. I am sure insurance companies will gain access sooner or later.
glasgow_bhoy
I'm not affected, but if I was I'd be interested to find out more about this. I'm all for my data being shared for research purposes to help solve medical mysteries.

However as Dwain says- insurance companies will no doubt eventaully get their greasy little hands on it.
Dwain
Just dropped mine off at the doctors, they were the first they had seen, no one else in the whole of Ramsbottom has cottoned on..........yet.
minotaur
Every time you go to hospital lots of staff ask you questions and take notes.
Since this happens every time you visit hospital it's clear that no-one ever reads the notes.
Since my local hospital seems unable to get notes to the appropriate ward within several hours of a patient's death I think it might be good to have SOMEONE read the notes.

[I don't really mean the last bit. Just ranting.]
enfield freddy
http://www.gponline.com/News/article/12291...t-data-sharing/




and yet your doctor may get fined / sanctioned or whatever if he informs you about opting out ,







Fredd
QUOTE (enfield freddy @ Thu, 30 Jan 2014 - 15:41) *
and yet your doctor may get fined / sanctioned or whatever if he informs you about opting out ,

Strangely enough my MP, who is a GP and very vociferous on health issues, hasn't (as far as I can see) said anything about care.data or that report. Must be terrible having both a professional ethical commitment to doctor/patient confidentiality, and at the same being part of a political party that's steamrollering all over it.
delusional driver
Is this the same as the opt out where there were forms available at the quacks or posted out circa 18 months / 2 years ago or is this a fresh one with the government hoping that if we opted out previously we wouldn't realise there is another scam going on?
AscotGuy
This has been going on for years - http://www.hscic.gov.uk/hes. This was started in 1987.

I have worked on this project and outside organisation could request reports written based on the data.

So when you see a report that says Cancer Deaths up/down etc then generally they come from that data.

The data was anonymous but not to any great extent.
delusional driver
Ah right - anonymous is one thing but someone being able to see my name plastered all over is a bit different. Form went to the quacks this morning.

found an e-petition - not sure that they have explained what the petition is for very well but suppose that can be amended

https://submissions.epetitions.direct.gov.uk/petitions/59971
Dwain
Its been on the BBC today, starting with 'Today' I think the brown stuff is just about ready, just a few more reports and the fan will get it!
Unzippy
Related:

http://rt.com/news/uk-medical-records-backdoors-020/
Unzippy
Spreading?

http://www.telegraph.co.uk/health/healthne...e-warn-GPs.html

Fredd
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.
Unzippy
Front page of the Telegraph
Fredd
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.
minotaur
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.
bama
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...
Gan
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
Fredd
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 *****.
minotaur
Our policies are never wrong or misguided - we just need to browbeat communicate better.
Gan
I can remember hearing that "need to communicate better" line in the 70s
delusional driver
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 ......
Fredd
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.
bama
pile it high
sell it cheap

transaction numbers will be LARGE
and ongoing....
ManxRed
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.
Incensed1
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.
Fredd
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.
Fredd
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.
Unzippy
HMRC - bandwagon - jump

http://www.bbc.co.uk/news/uk-27086401
c2k
Care.data database now scrapped smile.gif

https://www.theguardian.com/technology/2016...medical-details
Fredd
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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