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back to article Cameron: We'll turn NHS patients into real-time drugs lab rats

Prime minister David Cameron said his government is launching a consultation on changing the NHS constitution so that the "default setting" is for patients' data to be used for research unless the patient opts out. In a speech to the Global Health Policy Summit in London, he said that the UK is going to be the "world leader" in …

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parasites

the tories really are scum huh? this is a money move, and nothing else.

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Re: parasites

I'm presuming that question is entirely rhetorical

Sigh, only 3 more years of the blue meanies and then who knows what knobbers will be in parliament.

Maybe the comentards of El reg should form a political party. We only disagree slightly less with each other.

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Anonymous Coward

Re: parasites

Hear, hear!

I say, the House of Lords should be populated with Mac owners, but only if they're running Debian.

The Commons should be run by (mostly x86) wielding BSD fans.

That should improve the stability of the country.

Win-tards - well, they're who we're replacing, right?

/ducks, runs, hides until the war is over.

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Re: parasites

I totally agree with you.

The way I see it, the public purse will have more money and drugs companies will have more data available to them about possible problems.

What bastards!

I sincerely hope that if I have an adverse reaction to a drug that no one else knows about it so they can keep using it on other people. I know, I'm not a nice person.

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Re: parasites

"public purse will have more money and drugs companies will have more data available to them"

great! but its not his data to sell. and what happens when it leaks? and ends up on the pirate bay?

this is a horrible way to drum up money with no effort. he is selling the medical records of his citizens, to big biz. deplorable.

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Anonymous Coward

Re: parasites

And why not.

BigBiz long ago bought the politicians, now it is their turn to sell us to BigBiz.

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Re: parasites

And I completely agree with you. I'm surprised this data isn't available wholesale already. We're always hearing stories about X or Y drug might cause Z. If the boffins have access to the data for all the patients taking that drug we should be able to spot/dismiss these things sooner.

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Re: parasites

If the TOrY'S realy had there way then everybody who does not vote will be automaticaly opted in too of voted tory.

Piss's me off that society has a situation were to have you opted in by deafault were it is in your interest then the default is to have you opted out and when it is a situation were by default you would want to be opted out by default then they have a default of opted in. Can even bet that to opt out you have cant do that at your doctors but have to deal with some other department that or two or three.

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Anonymous Coward

@ PXG : What's wrong with you?

Give a monkey a typewriter and some LSD and they will produce something that is more comprehensible than your comment.

I think you must have lost your way and been unable find the place where they were giving out brains.

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Re: parasites

>> If the boffins have access to the data for all the patients taking that drug we should be able to spot/dismiss these things sooner.

You think that they'll give that data back to us? Not a chance.

That's not how it works. More likely they'll use it to formulate a new drug with different side effects, which they will then patent and sell for more than the old drug, all the while denying that there is anything wrong with the old drug.

Big Pharma are not charities. Just because our data the might help them build a new drug, don't expect a payback.

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Classy.

Can't imagine that Pfizer, GSK or chums haven't given DC some 'encouragement' here, can you?

I wonder how many nice, cheap data processing centres they have in Bangalore or similar. :o/

I await my cheque from Big Pharma with less-than-baited breath

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WTF?

Orderly!

Would you bring the straitjacket and restraints to cubicle three please. Mr Cameron's has got out of bed again.

He just keeps muttering "world leader" again and again. The poor man clearly has delusions of adequacy.

We should never have allowed him to watch the Olympics.

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I thought that doctors were suppose to fill in reports about incidents of allergic reactions and adverse affects already.

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@James51

They are supposed to, but they often don't. And few believe anything useful is done with the collected data anyway.

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Black Helicopters

Next stop

Soylent Green.

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Meh

Re: Next stop

Classic, 'we're eating.... People!'

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Joke

Yeah, those evil researchers

All big drug companies are pure money-grabbing evil, giving us nothing back. Burn the lot! I want drugs that have never been tested on any sentient beings or other life forms. What's that you say? Cancer? Give me organic carrots!

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Anonymous Coward

Re: Yeah, those evil researchers

We could always just test drugs on you. That would avoid testing on sentient beings.

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FAIL

Re: Yeah, those evil researchers

It's only a matter of time before this information is abused in some way. Blackmail when it reveals you have a socially embrassing condition. Insurance companies driving up your premiums if they figured out you were alergic to cheap drugs for a particular condition.

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Re: Yeah, those evil researchers

Oh well, looks like you win that argument with your persuasive rhetoric!

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Re: Yeah, those evil researchers

An old one but --- would you ever buy a dog shampoo that's not been tested on animals?

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Re: Yeah, those evil researchers

All big drug companies are pure money-grabbing evil, giving us nothing back.

They sell us things back. I can think of no examples of things being given back.

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Anonymous Coward

Adverse Reaction Reports

I wish that some of the adverse reaction reports were filed along with the adverse reaction to misstreatment reports. For example

1) One daughter left bed almost bound by the reaction to one long term treatment with the GP unable to trace the problem. It took about 45 secopnds with a private appointment to read the complete notes (provided by her parents) for the private doctor to diagnose the rectification actions.

2) Between four a five years wrong treatment for my wife when a simple blood test would and later did find the cause of her problem.

3) If Simvastin works for you great, alternatively if you like the feeling that your blood has been replaced and that battery acid is fueling what is left of your muscles go ahead and take the stuff.

4) Twenty years and still counting to get receive a printed report of a diagnosis for daughter in (1)'s under lying condition.

3) Side effects of withdrawing treatment leading to attempted suiciide three times for daughter in (1), perhaps they might learn if we let them try the change a fourth time?

5) Other daughter took a similar length of time (19 years) to get partial diagnosis of her still ongoing and only partially controlled problems.

On second thoughts the NHS will probably not like to let that schedule into the public arean?

Anonymous for obvious reasons and the above list is a brief extract.

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Socialist medicine, whee!

Let's have some of that in the United States, why don't we? I can't wait for my choices to range from shitty, incompetent doctors on the one end, to incompetent, shitty doctors on the other! Thank God we have the indigent and the shiftless, and those who buy votes from them en masse, to show us the way --

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FAIL

Oh dear

Cameron

Usually

Not

Thinking

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Anonymous Coward

Re: Oh dear

Tories

Will

Always

Turn

Sinister.

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governmentt

I'd rather see a group of pre-school children in charge of the country, they'd bicker less and make far fewer childish decisions.

This is why I vote green party. I agree with some of their stances, but I know they'll never get a majority vote, so I have a right to bitch when somebody else I dislike more gets into office.

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Re: governmentt

Your green vote gave more power to the tories!

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That you vote

makes you part of the problem.

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Pint

Re: That you vote

Exactly, if we all vote blank that would send a message right up 'em

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Re: That you vote

Aye - a 'none of the above' box on the form would do just nicely. I'm quite sure it would also increase voter turnout.

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Mushroom

Re: That you vote

Why not? Rather that than perpetuate the apparent legitimacy of mob rule, or "democracy", or "crowdsourced government" as I gather the kiddies are calling it these days.

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FAIL

Yes Mr Cameron, except...

...there won't be an NHS will there, because you're hell bent on dismantling it, aren't you.

Currently the vast amount of very valuable and useful data collected is largely all under the one NHS roof and data systems and formats are *fairly* compatible, and access to the data is (relatively) well controlled. Once the NHS is a random mixture of private companies, third sector organisations, charities, trusts, international businesses, etc, who's going to be looking after all our personal data then, eh?

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Re: Yes Mr Cameron, except...

Call me naive, but I should imagine someone would come up with some sort of standardised data access method. Profound, I know, but it might just be possible.

As for dismantling the NHS, doesn't sound like a bad idea. As long as treatment is free at the point of use and of good quality, who cares! Do you refuse to use your GP because he/she is a privately run business? Do you even know that GPs are not part of the NHS?

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Re: Yes Mr Cameron, except...

As for dismantling the NHS, doesn't sound like a bad idea. As long as treatment is free at the point of use and of good quality, who cares!

Yes because a dismantled NHS rebuilt from Private companies is going to stay free to use for how long? The NHS has it's problems, sure, but I think people forget just how lucky we are.

As an example, having grown tired of getting addicted to prescription painkillers (I don't blame the GP, we were both told Tramadol was 'non-addictive'!) I discussed the matter with the doc and moved myself onto a more, ahem, natural product.

Now, if I'm skint, I have to go without pain relief. Not at all pleasant, especially when it looks like it may be a full month before I can purchase another stash (yes, sadly I'm that broke at the moment). I've spent most of my life in pain, so whilst not nice, an extra month's not going to kill me. But it did make me think, what if all healthcare came with the proviso that you've got to be able to afford it (or at least, an insurance policy?).

Bearing in mind I actually had to consider whether I could afford to continue my life insurance this month, how would I (and others in a similar position) cope if the only way you could get (non-emergency) medical care was to pay for it (with money you don't have).

From my point of view, that's a shit state of affairs. Yes the NHS may be slow and sometimes inadequate, but at least there's some provision there. I made the choice to switch to a more privately sourced form of analgesia and knew what I was getting into, but would I do the same for all my healthcare (or may family's)? Fuck no.

The problem we have is that funding to the NHS will slowly decline as the private sector takes over (especially whilst the Tories are in power) and we'll end up with a new NHS called BUPA. If you want to sit back and watch it happen, it's your perogative, but having seen a little of the other side of the fence I intend to do what I can to fight it (which at the moment is probably limited to arm-chair complaining!)

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Re: Yes Mr Cameron, except...

"Call me naive, but I should imagine someone would come up with some sort of standardised data access method. Profound, I know, but it might just be possible."

OK, you're naive.

It might just be possible if we had an integrated *national* health service, but what we're going to end up with is a free market of 1000's of competing organisations. Who do you think this 'somebody' is who will standardise things across that lot? The politicians?!? Private enterprise?!?

Yep, naive.

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If... then... else

If access to this data was properly controlled, then great. It could be extremely useful for any number of non-evil groups.

If, however, it is handed out to any Tom, Dick or Harry, or simply leaked by mismanagement, then abuse is going to be a serious concern. As mentioned by someone earlier, insurance companies would love to get their greasy mitts on this kind of dirt.

...actually, now I think about it, poor data quality may make this database largely useless anyway. Data from clinical trials are often really difficult to interpret since doctors don't care/don't have time to worry about consistent data entry.

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By heavens there are some cynics on this forum. I believe no less than Ben Goldacre, no friend of big-pharma has been advocating the use of (anonymised) data by researchers. Researchers does not necessarily mean drug companies - it also covers those looking for the most effective treatment regimes.

Also, the idiot byline about "turn NHS patients into real-time drugs lab rats" is ridiculous. Nobody is suggesting patients will be entered into clinical trials without their knowledge (or forced into such). As always, clinical trials are subject to review by ethics committees.

The writer of this headline needs to grow up and not make tabloid misrepresentations. There is a discussion for grown-ups about the ethics of using individual health records, anonymised or not. However, to characterise this as patients being turned into lab rats is just plain dishonest.

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Agreed

This is actually a good idea. But it's the evil, evil Tories who hate the NHS that are doing it, so I also agree that it's probably a cover for doing something horrible like cutting off treatment unless you pay to go private.

I think we deserve this government to teach us a lesson, but I wish there was a God to punsih them for the stuff that they break.

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Re: Agreed@ Robert Carniegie

"I think we deserve this government to teach us a lesson, but I wish there was a God to punsih them for the stuff that they break."

The government to teach you a lesson was a recent one, run by a war mongering traitor, who's blind halfwit sidekick spent this country into a financial black hole of Grecian proportions, in the biggest act of inter-generational theft this country has ever seen, whilst blowing the biggest financial sector bubble in history, accompanied by weak regulation.

So far the famed spending "cuts" have been negative, in aggregate terms. For the hard of thinking, that is to say that public spending has increased, as has government borrowing, and taxing, which I presume is what you actually want?

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Very well put. When our 2nd kid was born stateside we were asked if we would donate any unused blood samples and access to anonymous records for research and we consented (no such requests for kid 1 in the UK despite being in a teaching hospital?). In principal I agree with the idea of allowing researchers access to data but there has to be some level of control.

I can't help but feel a little paranoid here, but business and government have proven time and time again that personal gain is more important than following rules. I cannot think of two groups of people I trust less. Should that get in the way of something that might help everyone in the long run?

There are diseases we need cures for, diseases that can be cured if we apply ourselves. A little more time working on cancer and a little less working on the next stealth uav or whatever might be a good idea.

As for the nhs, try living in the states, the nhs is phenominal. It delivers mostly excellent quality service for a very low cost and everyone gets treated for nearly everything. Perfect they are not but the Beveridge and Bismark systems are leagues ahead of the states in efficency and coverage.

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@Steven Jones

Quite right. The basic idea is a good one, even though it will almost certainly be screwed up beyond all belief in the implementation. (Big pharma should be paying big bucks for access to millions of records. I bet, however, that they'll pay next to nothing once the monkeys that pass for contract lawyers in the civil service have finished.)

As usual, the way to see this is to imagine the uproar if somebody was sitting on millions of health records that *could* be used for any number of studies but sadly they've decided that "we" aren't offering anough cash so they aren't going to release them. Such a person would last about 5 seconds in the court of public opinion. We can all see the potential benefits to exploiting the records that are created as a by-product of the NHS doing its job. It's just a question of not screwing up.

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Re: Agreed@ Robert Carniegie

The financial black hole you speak of is solely made-up of private debt.

The real black hole is that of the PFI scandal...started by a previous conservative administration, and estimated to be worth some 300 billion to the companies involved...and wrapped-up in long-term contracts with penal penalty clauses...to their shame, labour continued it.

If you want real scandal, of astronomical criminality, you should look to the banking and other financial institutions. Really scandalous....and quite literally....some dozens of trillions of whatever currency....locked into everything worth nothing....

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Re: Agreed@ Robert Carniegie

"The financial black hole you speak of is solely made-up of private debt."

Sadly not. In very rough terms we're talking about £6trillion of debt facing the UK, of which £1trn is straight public sector debt, £2trn is unfunded public sector obligations (primarily gold plated pensions promises), £2trn is finance sector bailouts and QE, and £1trn private sector debt such as mortgages and credit cards.

Nominally that looks like 50/50, but most of the financial bailout is notional, insofar as the money was magicked up, and what we will eventually be on the hook for is the difference between what was magicked up and what we get repaid. A not-reasonable guess would put that at around £0.3trn, but this won't be clear for a year or two. The reality is that PFI is a pimple on all of this debt, as an additional circa £0.3trn as you state, with about 90% of that signed up by that incompetent Scottish knob that the Labour party put in charge of the money.

The general willingness to do down our biggest export earning sector, our biggest tax payer, and one of our biggest employers is quite remarkable. I'd agree that there has been epic crime and incompetence here - but looking at the vast, unpayable debts run up by virtually every Western government (excluding financial bailouts), don't you think that it isn't just the banks at fault?

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Re: Agreed@ Robert Carniegie

It is largely the voting public who are at fault, directly and indirectly. We live in a society where we are rarely obliged to accept fault and will dive on any oppertunity to avoid responsibility like a fat kid on the last slice of pie.

Irrespective of your political leanings, consider society as a whole, exactly how successful do you think a candidate for PM or POTUS would be if they stood up and said

1- You ALL have to pay more tax (in some cases up from nothing)

2- There will be a reduction in most government services, armed forces and social spending

3- We will pass legislation that makes companies more responsible for their conduct and the sustainability of their methods, which would result in a decrease in growth (at least to some degree, its possible to argue it would reduce boom and bust) which will impact investments and pensions.

Individually, some may agree, collectively the person who gets in will be the one that promises some wonderful way of postponing dealing with it coupled with a few token spending cuts in the albatross cuddling agency and huge tax breaks for the companies and rich folks who paid for his campaign.

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Re: Agreed@ Rampant Spaniel

Hold one one moment there! At the last UK general election, the parties were falling over each other to claim to be harder on cutting spending than the others, and promising to raise taxes.

Unfortunately, once we'd got a government, they then spent eighteen months TALKING about the need for cuts and higher taxes, but delivering nothing in respect of either. By the time the cretinous halfwits had got round to starting, the iron was no longer hot, in that the public had got bored of the talk, and no longer believed it. And it quickly became apparent that Parliament lacked the spine, the vision, and enthusiasm to actually start slashing spending. So for everything they did do in terms of cuts and changes the knob ends then committed to raising spending in other areas. So they introduced huge tuition fee increases, and then that useless, idiot knob end Cameron decides to increase the foreign aid budget by the same amount he's cut from UK higher education. We have a defence review that was a work of monumental imbecility, but half the cash savings from that were thrown away on grandstanding in Libya.

Most of the public understand that the public finances are in a mess; regardless of who they voted for (!) they were promised cuts and tax rises, but in practical terms Parliament has as usual failed to deliver. And a key part of that is because of the UK's national religion of the NHS as free at point of issue, so that they've not cut the health budget in any worthwhile degree, and they've not looked at charging and co-funding options (added to which some NHS staff have sort to penalise those who have tried to co-fund treatments - private sector healthcare being some sort of pariah, unless of course it's a highly profitably GP practice reaming out the healthcare budget).

If we want to sort out the public finances, then there's some simple if brutal changes that can deliver:

1) Shut down 90% of BIS, DECC, and DEFRA

2) Stop 90% of foreign aid - disaster relief being the 10%

3) National construction corporation to employ the unemployed: Welfare for work, or no welfare. Use this resource to build the infrastructure that we currently can't afford to do.

4) Modest charges at point of use for the NHS for those able to pay

5) Eliminate gold plated public sector pensions, and slash the liabilities (by whatever means necessary)

6) Remove payroll taxes and red tape

7) Stop paying the EU for nothing

8) Stop immigration. Overall immigrants have been a good thing for the UK (and in the last 10,000 years, we're all immigrants), but our services and infrastructure can't support the existing population properly, added to which if you've got an unemployment problem, so letting in two or three hundrand thousand additional people a year isn't helping.

9) Examine a means of penal taxation for companies who offshore British jobs. Not sure if we could do this fairly, but worth looking at, given that our biggest export appears to be jobs.

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Ledswinger for pm

I vaguely remember the last election (the US doesn't really cover foreign things unless it's related to an upcoming invasion), for me it really highlighted the problem. There were shouts about who would cut and tax, but upon closer inspection some of the cuts turned out to be slower growth (although there have been cuts, usually in the wrong places i.e. less police and nurses, why cant we just get rid of mep's? and all msp's and welsh assembly members should double up as mp's) and as for tax increases, wasn't Dave recently wittering about lowering the top tax bracket? I remember theem going to great pains to state that they could reduce the deficit in a manner which we wouldn't really notice. None of them turned round and said, taxes are going up 10%.

I would add another to your list, placing more people back into taxation / reducing benefit levels. In the US, nearly half of everyone pays no federal tax. Thats truly staggering. Even if they only paid a small amount each it should help.

Also restricting what you can spend benefits on. The US actually gets a few things right, their WIC program (for mums and kids) actually gives out vouchers for specific things, they cannot be used at Gala bingo. Some benefits like 'food stamps' also called SNAP can be dispensed onto a debit card that cannot be used for booze or fags. I love wine but if I had to resort to the public purse I would not expect to be able to spend it on mad dog 2020.

Another good idea they have is unemployment payments are related to how much you paid in tax and limited in duration so if you get canned you can actually afford to carry on living and you are encouraged to find work. Exceptions on duration are made like during the current crisis. The US gets plenty wrong but having lived in both the UK and US I do like a few of their ideas and a few of ours.

Overall I'd be happy to see your idea's implemented. You'd probably be voted out in about 10 seconds, but thats the nature of the beast. Politicians have to walk a fine line between appeasing the companies that own them and us lot who vote for them. Thats why we continue borrowing. As it stands here, our property taxes are going up (in reality the 'allowance' is decreasing rather than a rate change) but shock horror all the rich folks with mc mansions on agricultural land still dont pay a fair rate because the local slime squad know who pays for their reelection campaigns.

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Re: Ledswinger for pm

Yay! I'd sort the mess out, and be happy to be voted out. Wouldn't even take a full term of Parliament. And I'd scrap MP's excessive holidays, make the turds work for their living. Which would give me more time to pass or repeal legislation (But even that could be simplified - I'd start off with the Repeal of Ten years of Tony Blair's Shitheaded Legislation Act, 2012).

Getting voted in is the problem. But even so, it might be the wrong career for me: Watching the British women's hockey team the other night, I came to the conclusion that of my various grave errors of judgement over the years, the biggest was not choosing to become a sports physio.

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National DNA database?

How exactly would this idea create a national DNA database? My doctor does not have my DNA and has no reason to ask for a sample so my DNA is not in my medical records. I'm guessing that will be the same for most of the population.

It would be nice if for once the anti groups would make a sensible argument so they don't get laughed at and ignored as nut jobs.

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