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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 ] ** [10.53%]
I'm unhappy with this, and I'm opting out [ 26 ] ** [45.61%]
I'm going to spread the word so that people know what's going to happen if they don't do anything [ 10 ] ** [17.54%]
Never heard of it! [ 10 ] ** [17.54%]
I'm delighted to say that I don't live in England, so this doesn't apply to me! (Yet...) [ 5 ] ** [8.77%]
Total Votes: 49
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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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Fredd

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post Tue, 28 Jan 2014 - 17:18
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sgtdixie
post Tue, 28 Jan 2014 - 17:49
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Thanks Fredd
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Wongsky
post Tue, 28 Jan 2014 - 17:50
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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.
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Gan
post Tue, 28 Jan 2014 - 18:26
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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

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bama
post Tue, 28 Jan 2014 - 19:35
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Good post Fredd.
the more people that know about this the better.


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Fredd
post Tue, 28 Jan 2014 - 20:08
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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.


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Fredd

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tapas600
post Tue, 28 Jan 2014 - 20:50
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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.


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axeman
post Tue, 28 Jan 2014 - 20:56
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Cheers Fredd, We are opting out


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Dwain
post Tue, 28 Jan 2014 - 21:48
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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.
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glasgow_bhoy
post Tue, 28 Jan 2014 - 22:39
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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.
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Dwain
post Wed, 29 Jan 2014 - 15:00
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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.
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minotaur
post Thu, 30 Jan 2014 - 15:19
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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.]


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enfield freddy
post Thu, 30 Jan 2014 - 15:41
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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 ,







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Fredd
post Thu, 30 Jan 2014 - 16:12
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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.


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Fredd

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delusional drive...
post Thu, 30 Jan 2014 - 17:23
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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?


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AscotGuy
post Fri, 31 Jan 2014 - 11:23
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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.
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delusional drive...
post Fri, 31 Jan 2014 - 16:17
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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


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Dwain
post Tue, 4 Feb 2014 - 15:40
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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!
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Unzippy
post Fri, 7 Feb 2014 - 15:32
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Related:

http://rt.com/news/uk-medical-records-backdoors-020/
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Unzippy
post Wed, 12 Feb 2014 - 22:38
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Spreading?

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

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