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back to article Hunt on NHS data sharing: Obviously we HAVE TO let people opt out

Health Secretary Jeremy Hunt insisted this morning that NHS patients who have refused to give consent to existing data-sharing mechanisms would be safeguarded under the government's new plans to open up information across the service. The Cabinet minister confirmed to The Register that the 750,000 patients throughout England who …

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Holmes

And those who want to opt out now?

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How about getting people to opt in rather than out?

If the only people you're including are those that have previously chosen to take part then the worst that can happen is that they're removed from a list in error and information is not shared and takes a little longer to retrieve. The other way around could lead to information being shared without the consent of those involved.

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so glad i opted out of this years ago when we had the chance,

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How do we know that our refusal was correctly processed into the system and is effective now ?

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Easy, go ask your GP. I did that the other day and the receptionist confirmed that the consent to share had been withheld.

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Unhappy

How can you trust them

The Govt seem to be hell-bent on making money out of us. I'm willing to bet they sell donated blood products and probably transplant organs too.

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Re: How can you trust them

Umm. Yes. How do you think the NHS works? It's an internal market.

See the price list at http://hospital.blood.co.uk/library/pdf/price_list_2013_14.pdf

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Re: How can you trust them

Frightening ! Could I live by selling some of my Optimised Pooled Granulocyte ?

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Unhappy

*nothing* is ever "blindingly obvious" to a Cabinet minister

Especially when it conflicts with what they (or rather whatever group of vermin senior civil servants) is advising them.

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Re: *nothing* is ever "blindingly obvious" to a Cabinet minister

I fear you identify the wrong vermin. The senior civil service are at least non-partisan and have a degree of expertise or at least experience in their field. They are mixed, but there are some good people in the civil service. Now SPADs are another matter- typically clueless, ideologically driven political village idiots appointed by the minister so they can be surrounded by yes-men who uncritically agree with the minister's every dunderheaded utterance.

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@breakfast

Personally I would disagree where civil servants are concerned. Using Phorm as an example: it was home office / BERR civil servants that deliberately failed to take minutes of meetings that involved Phorm. It was home office civil servants that tried to give out 'comforting' advice about Phorm, and it was in all likelihood not a SPAD that admitted Phorm to UKCCIS. Then of course you have the likes of the CPS that try to pretend that Phorm doesn't need to be dealt with.

'Non partisan' is not necessarily the same thing as 'No agenda'. They no doubt have their own opinions as to what should happen, and it's possible that this 'experience' that you mention leads in some cases to an unhealthy arrogance when it comes to who they think is right.

I also came across this:

http://www.guardian.co.uk/public-leaders-network/2013/apr/25/gus-odonnell-ucl-lecture-political

He clearly has some very strong views, many of which would have found their way into the advice given to ministers.

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Lithuania?

Is it Lithuania where you access all your gov records online? Interestingly, when the government updates or accesses your records, they leave a footprint behind that's clearly visible. so if they snoop without reason you have them over a barrel. I don't believe any private companies have access without your permission. This kind of respect for people's privacy wouldn''t appeal to Google or Apple users, Tories or Labour I know, but...

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Silver badge

Good luck with that.

I worked on a government project where they did something that could clearly be used to share people's data without their permission. They were adamant, in writing, that this was not the purpose and that it would never be done. Eighteen months later, they changed the spec to do the obvious and vendors had to build to the spec or scrap their products.

The price of privacy, like the price of freedom, is constant vigilence.

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Anonymous Coward

I'm actually totally OK about doctors and scientists having instant electronic access to my medical history, because if anything's certain in this life, it's that I am going to be old and frail and quite possibly in pain and distress at some point in the no-too-distant future. It would therefore be rather nice if the clever medics could by that time have come up with a way of mitigating the worst of it -- and if being able to access to my data electronically will help them, then I say have at it.

What I absolutely don't want to happen, though, is for that same data to be open to mining and analysis by any kind of "entrepreneur" seeking to enhance his own or his employers' profits and wealth.

And I see the role of politicians in all this to be that of drawing up legislation that permits and encourages the former and prohibits the latter, with appropriate sanctions. Whether Jeremy Hunt is suitably qualified for this role is anyone's guess.

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Whether Jeremy Hunt is suitably qualified for this role is anyone's guess

Given his past 'congrats' text to James Murdoch it would certainly be interesting to see any communications between him and the private sector.

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Yeah, yeah....

OK, so youre happy to shove all of your personal details on Facebook, Twitter etc, but, lets say a hospital wants to know some info on you, the hospital has to fax (over a secure fax line) to the GP, then they have to get the info together, fax it back (assuming the fax number is right), and people think that giving hospitals access to the medical records is wrong. I work in a GP surgery (and not for much longer hopefully) and its a real pain in the arse. We have hospitals always calling us for info for this and that, and there are a handful of patients who point blank refuse to have their details shared with the hospital they are going to! Madness. To get access to anyones records it has to be in writing with written and signed consent from the patient. Thats it. The only other organsiations who have access to the records without consent are hospitals, it has to be for whatever they are being treated for, anything else they too have to get consent from the patient and in writing. No consent, no access.

And lets straighten this all out, its called Shared Care Records, it should(!!) allow for hospitals to gain LIMITED access to your records, and if you want to opt out, you can. GP'S DO NOT AND WILL NOT SHARE ANYONES RECORD UNLESS THE PATIENTS GIVES CONSENT.

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Re: Yeah, yeah....

I am always amazed by the arrogance of the NHS IT professionals, who dare to criticise the people who have refused to allowed their records to be shared.

My wife and I have refused to allow our GP records to be shared with anyone, not because we are privacy nuts, but because the records are absolutely bloody inaccurate, DANGEROUSLY so (in my wife's case). We sat for an afternoon with the practice manager and corrected our records item by item, (wrong illness's, wrong treatments, missing illnesses, missing allergies). This was some years ago. I am sure that the records are now again in a complete mess. There is NO checking that the records are correct. In our health centre, they are entered by any spare body who has been lumbered with the task. There is NO data entry checking! The only diagnostic run on the records verifies that the codes entered on the records are viable, not that they have been correctly applied.

YMMV (but I doubt it)

oldcodger.

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Anonymous Coward

Medical data mining

I am a little bit deaf in one ear. And I had hay fever when I was younger. I always wondered whether the two are connected; I figure that sneezing is quite loud in your ear, and if you do a lot of it, maybe this causes noise induced hearing loss.

This is a perfectly reasonable hypothesis. And one that should theoretically be testable. The problem is that no one is going to make a lot of money out of the answer, although some people might not suffer hearing loss as a result. And to test this hypothesis would cost an enormous amount of cash. Because, at present, you would have to ask people for consent to use their medical records to answer the question. This would be very, very expensive indeed.

Informed consent is a good thing, but there are limitations to it, and there are things that we lose as a result; flip side there are things that we avoid as a result. It's a nuanced and complex debate; a reflex "they are just trying to make cash" response isn't really the answer.

For my money (erm), I would say that all analyses that are done and their results should be open to freedom of information request. That would ensure openness of analysis. I suspect it is unlikely to happen though, because it doesn't really fit with the free market ethos of this government.

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Re: Medical data mining

There is a legitimate balancing act to be done here. Suitably anonymised data (and I mean properly: as effectively anonymised as possible - no identifiers at all, not genetic, not even general location in the country) should be available to any researcher, regardless of what part of the research community they come (public, private, combination). There are healthcare advances to be made from this - perhaps not as big as being able to add demographic and other data, but certainly significant. That should be the cost to the patient of being in the NHS - your data goes into the unidentifiable mass with all the rest and it can be mined by whoever for the good of society, perhaps with a price to private users of the data.

Once identifiers come into it, then the full approval route should be invoked, with Research Ethics Approval etc. However, there is a bias towards the research providing a benefit to the individual patient - this can cripple slightly more blue-sky thinking if there isn't a clear advantage to that patient depending on how the local REC sees it. In my opinion, there should be a clearly-defined category of research in which people can say "yes, go ahead and do this research" regardless of benefit and if there is minimal risk (or even some risk but acceptable to the subject). There are a lot of people who would happily allow it, but they should be asked first (it is like a friend borrowing my tools - he knows and I know that I am happy to lend them to him, but asks and doesn't just wander off with them).

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The NHS will share your records whether you like it or not. The police mine them as to social work and education authorities

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That depends on where you are in the country. Some places are far more open with your information than others. I know some GPs who go out of their way to avoid giving information to investigatory bodies without due process. After that, they give the bare minimum required.

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I completely see the utility of a database that would seamlessly allow

everybody in the healthcare chain who is authorized to see the appropriate sections of my personal medical data (in the US this would include my insurance information)

I also see how bright the glowing red concentric circles surrounding such a system would be for data thieves.

And given how porous our systems to protect actual state secrets are, I therefore find myself not so keen on implementing such a system despite its medical utility.

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