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back to article UK.gov to require YOU to opt out of data-sharing plan with drug firms

Plans to share confidential NHS records with private medical researchers have been revealed by Prime Minister David Cameron. The government said in a statement yesterday that it was announcing a consultation "to change the NHS Constitution so that patient data is automatically included in clinical research, but giving patients a …

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So...

who do I go to to opt out? Doctor/PHT/Hospital/DOH?

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Look in the basement of the hospital

Behind the door marked "Beware of the Leopard".

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Anonymous Coward

your Doctor/GP?

You can elect not to have your records added... but they may have done that for you already.

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Meh

AIUI it will all be anonymised ?

Assuming they can get that right - and it's trustworthy - I can't see a problem with this initiative. At the end of the day, the NHS has paid a lot of money to collect this data ... seems bonkers to sit on it if it can earn some money.

That said, I bet the way it works is the NHS will not see a penny, while a few private companies - that might just have certain ministers as non-exec directors - rake it in.

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And why would we trust them with our data?...

Sorry, 'who' paid a lot of money? I believe it was the taxpayer (a lot of whom are also patients) who financed this system (which was supposed to be cheaper and more efficient than the mountains of files and paperwork that preceded it). A great idea and may well have saved a lot of lives.

What it was NOT supposed to be, was the basis of another free-for-all for this Governments 'whatever it is - monetise it!' attitude to...well...everything.

As for selling it to private companies on the basis that we get better access to newer treatments? (a justification that was doing the rounds on the BBC News on Monday). Hey guess what, they'll still be extortionately priced (they have to recoup research costs somehow), and if the National Institute for Clinical Excellence decide it doesn't provide value for money?... You simply won't be seeing these new treatments, but thanks for your data anyway. :o)

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Anonymous Coward

re:AIUI

I wouldn't count on it.

I got kicked off a DWP project because I asked if the database they had just sent to India for developers to work on had been anonymised. Read into that what you will.

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@JimmyPage

"Assuming they can get that right"

And that's the worry. Simply taking eg someone's name off the records might not be enough if there are other ways to link patient data together, just as what happened with "anonymised" search details.

But I agree if this can be done then the NHS should be well compensated for the information.

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Anonymous Coward

Consistent

I got kicked of a DWP project for a similar reason. They went ahead and spent the £6,000,000 on a public campaign despite the fact they could have bought targeted data from HMRC for £76

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England only, AFAIK...

According to a David Willetts on the Today program on Radio 4 yesterday morning, it's already happened in Scotland (about 2:18, but life is too short to fight with the damn awful seek in the BBC's iPlayer). I certainly wasn't asked about this, and will ask my GP when I next see him...

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Devil

Harry Lyme upon that Ferris Wheel in post-war Vienna comes to mind.

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Why

am I not surprised ?

Hands-up all those who remember having to opt-out of all their data being entered into the spineless NHS spine ?

This at a time when people, many of who are in positions of trust such as police and nurses, are being prosecuted/sacked for using their privileged access to data to:

Look-up possible girlfriends

Check-up on boyfriends/girlfriends/wives//husbands/others wives, husbands etc etc etc...

You just CAN NOT trust government at all, never mind with data.

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Anonymous Coward

Spine not so spineless

I guess you mean the Summary Care Record as the spine is a messaging service.

What they didn't tell you is that you cannot opt-out of the Personal Demographic Service.

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Unhappy

Free prescriptions?

Or are we expected to pay for the drugs that will be tested on us?

If NICE won't authorise the general use of a new treatment, can the manufacturer offer to sponsor the patient in return for access to their records?

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WTF?

FFS

Just not bother encrypting any medical data, copy to CD/DVD/Flash drive & leave some where. Same result.

I cannot wait till the EU hears about this.

Maybe this is why the ICO is toothless.

All your illnesses are belong to us.

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Anonymous Coward

dont you mean...

All your ilnesses were caused by us!

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Anonymous Coward

So they'll provide a PC with internet access

To my gran, who has home visits and been house bound for 8 years to opt out?

her GP has yet to bring the forms for her to view her records as all she gets visited by are locums or the nurse, she hasnt seen her own GP in over 10 years

another NHS failure to consult the people it's shafting err aiding

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Unhappy

Waht difference does it make?

If they don't sell my data, they'll only lose it.

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There is no way to debase the public that the Tories don't seem to like regardless of the consequences for the people who (didn't) put them in public office. How much do you want to bet MP's records will be protected?

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Alert

Not just letting the data out

How long will it be before mission creep means that doctors are expected to ask you questions that provide useful data for the researchers, not just useful data to treat you?

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Devil

Anonymized

No need to worry! The data is being anonymized! This means they will remove your name, but include your age and postcode (no shit).

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Talk about sensationalism...

If the data is anonymised, I don't see any problem. I'm sure there's probably a horrendous number of deaths that result every day from poor treatment combinations, which are never identified because researchers (including government scientists) don't have access to data like this!

What's the point of medical records, if not to improve medical treatment?

It's also reassuring to see the government acknowledging the importance of science for once (pretty much the only area where Britain leads at something).

The best thing for everyone would be to push for thorough identity stripping of the data, and safe, confidential treatment (i.e. don't outsource the preprocessing to street kids in Somalia).

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Talk about sensationalism...

Yep - anonymised before it leaves the back end system, so I can't see the issue here.

And it's not Confidential records - it's not even a extract of the Summary Care Records.

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Anonymous Coward

Anonymised data tends to have traces in it that lead back to a person. If this wasn't the case then there would be no context for blood test results and other records and this would be a major obstacle to the data being useful for research.

If this anonymisation were truly possible I'm sure the NHS would be willing to provide a set of anonymised data to test this principle. Want to bet that they won't allow this?

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Anonymous Coward

You might be right.

If so, why not ask permission?

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Anonymous Coward

The pharmaceutical industry is probably more likely to hide bad results rather than use them to shine a light on known issues. To do otherwise would inevitably lead to profitable treatments being dropped. And it is this industry that our personal data is going to be shared with.

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If data is made open, it will do the exact opposite of what you're saying. Instead of enabling big pharma to hide its mistakes, it will allow independent groups to show where problems exist.

Of course, independent studies are already conducted, but no matter how well controlled they are, when cohort sizes are only tens to hundreds of people, there's no way you can properly assess a drug's safety.

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But identity can be ever so relevant - location for disease clusters, age and sex for patterns, relationships for genetics, treatment history for complications. Good data is rich and revealing and that sort of quality is opt-in stuff.

If you just take the names out, it's pretty easy to re-nonymise too: how many poorly old grannies are there in my street, well, Mrs Miggins must be [GUID].

My .02, if the anonymous summary data is so useful, open-source it, make it available to us taxpayers to do surprising and incredible things with.

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Pirate

Well, ignoring the concept of "anonymising" data that needs to be specific enough to allow them to process it for useful statistics (which I'm a little skeptical of), this data is being offered to *private* companies.

I'm sure there are some well-meaning, private medicinal research companies out there, but I don't think it would be too unfair that a large number of them will be more than happy to cherry-pick/skew such data in order to bolster their own agenda.

Obviously, this already happens even without this data, but the idea that its being sold will benefit the greater good is (in my cynical mind) unlikely.

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I have no issue with this...

but I am still trying to figure out who it is I go to get the payment for each use of my medical record by these private companies. I am going to get paid aren't I??? This is what we are doing this for isn't it, to enable drug companies to develop drugs that make them bigger profits to so they can hand over bigger bonuses to their management?

If the fat cats are getting fatter then I want my cut, no more free data from me. I think a price of £10 per use should see me sorted.

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Pint

@bluenose: "but I am still trying to figure out who it is I go to get the payment "

Presumably, you will receive payment in the form of better healthcare by the enriched NHS that will result from the selling of the data.

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@Bluenose

Every treatment you have ever had in your life - many of which have contributed to the likelihood of you living to make this comment - has come from the willingness of people to have their data used by someone that made some money out of it. The NHS has been a major source of information that has improved healthcare across the globe, because it is a centralised, governmental initiative, which makes data-aggregation easy and cheap.

Despite my long-standing aversion to data-creep (look back at previous posts for proof), I cannot see the big problem here - the benefits outweigh the costs, however calculated.

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Anonymous Coward

doesn't bother me...

I've been registered with a doctor once in the last 20 years. It was ten years and three houses ago, for a couple of months in a different county.

My dad was registered. He kept getting pains in his neck. Went to see his GP and was told that he was "quite tall". A few months later died of a massive brain bleed. My wife kept getting out of breath, low iron, bad stomach pains, deadness in the hands. Eventually diagnosed herself as gluten intolerant after years of doctors not knowing what was wrong. Cut out wheat, problem solved. My son has Lyme disease, an ailment about which the NHS has no clue. We paid to go private. I took my daughter into casualty once and they wouldn't see her until I provided the name of her school. (Presumably I was a suspect child abuser).

NHS? Sorry, not a big fan.

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i had severe pain in my foot for 2 years....

it felt like i was stepping on a drawing pin every time i walked. i ended up putting all my weight on the instep. and walking with a slight limp for 2 years.

after 2 years of seeing 3 drs, having an x-ray and being put on tablets etc i asked them to be referred to a podiatrist. i got in within a week.

the podiatrist told me i had a corn. she got a scalpel and cut it off. all i do now when it plays up is grab a stanley knife and do the same.

my father who had Parkinson's disease was told to his face that there was nothing wrong with him and that maybe he was overreacting.

my wife who was due to give birth in 6 weeks was told that she was ok, even after all the symptoms for pre-eclampsia were showing. the midwife said not to come back for a month as she was on holiday.

luckily her mum was an ex-midwife and took her to hospital where she was rushed in for a c-section less than 24 hours later. she only just survived and our son would have definitely died. he was 6 weeks early but very healthy and didnt need to even go in the baby care unit.

yeah, i trust the Drs & NHS a lot! :(

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FAIL

"Assuming they can get that right - and it's trustworthy"

Bahahahahahhahaha...

Oh I'm really sorry, but that's a good one.

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Boffin

Yes I have to admit

I thought that too. But sometime we are not in danger of being too cynical ?

The real test is whether the government/NHS can manage to develop a system to produce pure stat-worthy data. I can see why they would need sex, and age. But no need for location data. Instead the requesting company just needs to say "within 30 miles of London", or "at least 10 miles from the nearest connurbation", and the query produces the appropriate records without supplying the location.

I would also expect the system to generate unique IDs for each dataset - although IDs may need to be consistent if you are requesting time-sequenced data, so you know patient X in 2001 is the same patient X in 2011. I don't see why birthdates should be supplied, unless there is weird seasonal-type study going on.

I think most people miss the point of how this data can be used ... statistical analysis of medical data can sometimes reveal incredibly significant, but hitherto unseen links[1]. It is also costly, and therefore not done very often. If by opening up massive tranches of anonymised data to interested companies, we might - just might - push ourselves into the forefront of analysing (and therefore understanding and treating) diseases.

For my own personal situation, MrsJP has multiple sclerosis, and I have long been convinced that when enough data is analysed and cross referenced (in the mother of all Venn diagrams) we will see the "aha !" which will point to a cause - and a cure,

[1]If it were not for an enterprising doctor (Snow) who did this with Insurance company data, in 1854. He overlaid Cholera deaths onto a contour map of London, and was able to tell the government that is was not poverty that carried Cholera (as was thought) - it was water from the Thames. Result ? 30 years before we even knew what Cholera was, London had a world-class sewage system (thanks Bazalgette) and no Cholera.

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Anonymous Coward

Is Nick Pickles's Big Brother...

Eric Pickles???

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How to opt out.

To opt out you simply need to go to the “Government Opt Out Building” where you will need to fill in an “Opt Out” form which you will find in a locked filing cabinet which itself is located in a disused lavatory, the one with a sign on the door that reads “Beware of the Leopard”

This is all of course in the governments “Opt Out Department” which doubles as the Cellar.

Bring your own flashlight.

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Boffin

HHGTG

You failed to mention which planet it will be on

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Anonymous Coward

I'd like to bet..

..that the one down-vote for most of the comments above is from the same person.

I wonder which contract they are working on?

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Smoke and Mirrors

I campaign on medical privacy and to me it looks like you will be of Researchers contacting you but be able to opt out of your medical data which will be anonymised down to date of birth and postcode. See Prof Ross Anderson Lightbluetouch paper blog for the issues of anonymised data.

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Anonymous Coward

HMRC privatisation

Wait until they go ahead with private companies taking over HMRC contact centres (yeh they doing this too) it's only a trial and they can pull the plug on it after 3 months. But it won't be long before everything about you is laid bare before any company that want's it.

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Anonymous Coward

I can see in a few years we will be opting in to view adult sites BUT opting out of our personal data being sold to the highest bidder. anonymised data is easy to piece back together remember the AOL search data that was "anonymised" but was easy enough to put everything together and come up with a name.

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g e
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FAIL

GSK and Pfizer, et al

Are these included under the umbrella term 'Researchers' ?

opt me out dammit.

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anonymisation doesn't work

For that that think anonymised data is safe, do a Google search on Mass. Governor Weld. Mass. did a similar thing and a journalist was able to get Weld's medical data with a few simple searches. If you know a few details about someone, such as gender, age, specific medical conditions(diabetes, heart disease, epilepsy, etc) as well as even a general location, you may be able to generate a complete profile of individuals and discover what they have been hiding, such as HIV status, anti-depressant use, STDs, and so forth. I am sure that no one will mind all this information being sent to pharma companies, and all the outsourcing companies that they use./sarcasm

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Flame

http://www.theyworkforyou.com/

Write to your MP, tell them to make sure this doesn't happen. Tell them that Tories and Lib Dems won't see power for a generation if they go through with it.

Medical information is the *MOST* sensitive data stored. Nobody should get hold of it except qualified medical professionals, and only in circumstances directly pertinent to your health.

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Anonymous Coward

NHS Security Health Check

site:nhs.uk "cheap viagra"

Results 1 - 10 of about 235 from nhs.uk for "cheap viagra".

site:nhs.uk "cheap cialis"

Results 1 - 10 of about 150 for site:nhs.uk "cheap cialis"

site:nhs.uk "cheap levitra"

Results 1 - 10 of about 62 from nhs.uk for "cheap levitra".

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Anonymous Coward

easy game

site:nhs.uk cheap aspirin Results 1 - 10 of about 825

site:nhs.uk life is cheap 477,000 results.

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Coat

while im not a brit

I just want to take this time to ask El Reg to opt me out of and data sharing in relation to that dealing with me....whats that? They already shared data about me with others? Damn. Ok well then just hand me the coat there and close the barn door behind me. Thanks.

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Pirate

anonymisation(sp? gr?) doesn't work

It's surprisingly easy to reassemble disaparate information to find out who the original person is. Ever heard of web profiling?

Anyway, the point is somewhat missed - the government doesn't "own" this information, it is given to medical staff in confidence for the purpose of diagnosis. I can't imagine that this idea would pass data-protection requirements.

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Stop

I would like to see this info, anonymised and rented out/licenced on a eg yearly basis and earning money for us - NOT sold off like public land for £1 to private developers.

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