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back to article UK health records should not be flogged off

Harry Cayton was only appointed head of the health service data watchdog on 6 November, but he has wasted no time in putting the boot into how the NHS wants to treat patient data. Cayton, the man who won UK citizens the right to opt out of having a centrally stored medical record, is unhappy with proposals which would allow …

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why?

I'd have nothing against researchers being able to contact me as a potential tester for cure for some rare disease I happen to have contracted. Of course assuming they know nothing about my identity, but why should they? The communication, at least initially, could still be made possibble through patient's GP. There is nothing difficult in replacing patients data with a number and allowing only GP to link the number with personal details. Unless of course NHS systems are designed by morons ... hey, wait ....

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Unhappy

If this guy dosn't get his way

How long until Insurance companies are allowed to trawl the data.

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Anonymised files?

Right...

How about this;

Just leave things as they are.

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Anonymous Coward

How about?

Allowing patients to opt in and out of being considered for clinical trials independantly? I, for one am willing to allow this miniscule invasion of my privacy on the off chance that I might be considered for a trial if and when I need it.

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IT Angle

Cerebral Palsy & Stem Cells

My son has cerebral palsy, for which the only forseeable (at least at the moment) 'cure' is the use of stem cells, to re-build the missing cells in his brain.

I don't care where that letter comes from, I and my wife would be interested in anyone who is proposing a study into the use of stem cells to help with CP.

There is a site which does attempt to link doctors/ researchers and patients at http://clinicaltrials.gov/ but I don't know whether it captures all trials in the UK, and it doesn't have anything of interest for us at least.

I can see that the researchers would like to have an idea of where people come from (geographically), some details on the patients condition(s) and the like, but they don't necessarily need to know all the details of the people that might match their criteria.

However, if people are interested in finding out more about a proposed study (after being initially contacted) then the only realistic method is for the patients to then contact the researchers.

It might be a nightmare to protect people against unwanted contact/ data protection etc. but the important thing (at least to me) is that contact between researchers and potential patients/ subjects is effective.

I would also like to find a way of suggesting research ideas to whoever might co-ordinate these things, but I guess that's another story.

ttfn

IT? - well if ever a website is the answer then I have the questions.

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WTF?

How can they possibly have considered anything *other* than keeping the data anonymous?

There is no conceivable justification for J Random Researcher to be able to see personal details of everyone with a particular medical condition, and there is no need for it. Sending the letter automatically without the researcher seeing the name and address is trivial.

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whose data

Is there nothing the government will not stoop to? Though i appreciate that worthy causes may benefit, one cannot redefine the absolute privacy that medical information is attained under. Patient-doctor consultations should never leave the surgery/hospital. I might not want my wife, or new partner to accidentally open a letter offering me new treatments for, for instance depression, erectile dysfunciton, nor do i want to have to answer a fair question of "whats it about dear?" when i receive an official looking letter. These things are private.

The govermentards cheerfully sold off the DVLC data, and a number of "firms" got in on sending bogus parking tickets with "pay now or I'll double it" type demands, targetting expensive cars, for instance.

Who can say what frightul scams will be enabled even though (partially) anonymised patient record data. But that is not the main point, on principle one cannot retrospectively change the scope of the privacy conditions these data were surrendered under.

Maybe researchers' legitimate interests could be served by writing to the doctors, so that next time you are in the surgery, only then can the doctor discuss that an offer to participate in a trial has been received.

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Doesn't this break that golden rule...

Re patient confidentiality? This is another example of our personal data being used as a cash cow and, again it is being dressed up as something of national benefit.

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Well Informed

1st party access - ie GPs is fine, in the scenario painted in the article. however, informed consent is harder to achieve - we cannot presume that al NHS patients understand the implications of giving a "care-blanche" authority to disclose. our Data protection Act gives individuals rights which would be severly undermined if this stupid idea would ever get off the ground. i'm sure the ICO would have major objections to this ill thought out scheme.

BTW, is this decision being made on commercial grounds? i.e. will the cos pay for the info, thus reducing NHS deficits LOL

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Even easier, less work, less costs

Just ask the Russians/Chinese for access to their database

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Boffin

Flogged? You should be

Which Sub wrote that headline? We are talking about researchers in universities and public research institutes and the NHS here. Not BigPharma.

Try again.

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Anonymous Coward

"I for one" is not "everyone"

"Allowing patients to opt in and out of being considered for clinical trials independantly? I, for one am willing to allow this miniscule invasion of my privacy on the off chance that I might be considered for a trial if and when I need it."

You are of course free, Mr Anonymous Coward, to send your details off to any trials that may be happening or ask your GP about them, which is apparently what happens now, GPs tell patients about the latest wonder drug undergoing trials.

However this is different from researchers being able to *pull* your details. Since *you* consenting does not count for *me* consenting, and I do not consent.

At best they could make it opt in. You could consent to give away your details and be included in the 'available for research' list. That would be up to you.

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Unhappy

ugh!

Reading this made me sick to my stomach. What would constitute "medical research"? You can bet your left nut, that it will be as open and vague as possible. And I share the fear with John Imrie; just how long before the insurance companies find ways to abuse it?!

Sorry; but the wholesale trawling of privileged data by unknown parties, whether anonymised or not is a definite no-no! And then how long before you get something like the following?!

"Hmm, we have some new drug to test, but human guinea pigs are not interested because of the side effects... I know, lets trawl the UK for people who've got nothing left and tell them it's perfectly safe and will fix everything and not give them any cause to doubt us......"

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Jobs Horns

More.........

spam mail coming through letterbox, or even worse say the postman does what they normally do

and deliver it to your neighbours and they read it and it says"......we see from your medical records

that you have Aids....or even "a highly contagious disease...".

No they should NOT use data all for marketing. Remember all these liars that exist in Labour

Government and Councils, all the promises and BS about never using our data and they then go and sell it to highest bidders (i.e. Census information).

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It's worth noting

That whether or not you'd want them to be able to search the records, this seems to be one of the few decisions recently that has paid more than lip service to privacy. I think that's a great step in the right direction. keep it up!

If we can have a system that provides the benefits with only negligible risk to privacy, I say well done.

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No no no no, no. Just no.

Doesn't this kinda break patient confidentiality, like really really badly?

Giving 3rd party companies unfettered access to patients records would be like taking alcoholics to all-you-can-drink 24-hour bars. It'll end in tears, and probably a death or two.

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when is the next election?

Great. So instead of losing all our personal data, they will deliberately sell access to it. And somehow that is supposed to be better.

What about a simple system for anyone to register their interest in participating in research. Such systems are already in place for organ donation and bone marrow donors. Anyone visiting their doctor could be given a leaflet.

It says a lot about this government that they instinctively opt for the most intrusive, most centralised approach.

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NO !

Or just stick to the system already in place, let GPs direct researchers to patients.

No-one should trust the Government or the NHS to decide our rights to privacy. Especially with private medical companies breathing down their necks.

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my pennies worth

@Nigel Wright

> Re patient confidentiality? This is another example of our personal data being used as a cash cow and, again it is being dressed up as something of national benefit.<

Pretty much hits the nail on the head.

@Muscleguy

>Which Sub wrote that headline? We are talking about researchers in universities and public research institutes and the NHS here. Not BigPharma.

Try again.<

Given that government has a history of selling details to private companies, (DVLA, as already pointed out in this thread), how long do you honestly think it will be before BigPharma get its fingers in the pie?

Try again.

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Consent is irrelevant...

So not happy with, again, ignoring advice about people giving consent to donate organs, the Government now wishes to assume our consent for others to rummage through our medical history to see if there's anything of interest to them...

If people like Bronek Kozicki and Paul Murphy wish to put their details or their child's details on some sort of central register of people with specific conditions who are willing to participate in trials, that's up to them, but they should *NOT* assume that because *they* are happy to do this I or anyone else will also be happy to do the same.

It is *MY* choice, not theirs and not the Government's.

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Not just insurance companies

It will be employers and anyone else that fancies a look, once these things are opened up all sorts of abuse can take place.

Keep the system as it is now, which is leaky enough we don't need more access by third parties.

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Anonymous Coward

@Organ Donor

I'm with you Graham, I heard that asshole Brown say this:

"But Brown said he would wait to see the impact of the taskforce's recommendations before considering again whether presumed consent was the way forward.... "The proposal is that we double the number of volunteers to 50%. If we can't get there quickly we will return to the proposal,".

NuLabours idea of 'volunteering' again, they're soooo departed for ordinary Joe-organ-bag in the street.

Many of us do not like the idea of being dissected by medical students, or used as target practice for ballistics tests or other misuses of the organ donor system. If they want to get more volunteers perhaps they'll clean up the system so that people explicitly consent to those?

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@Nigel Wright

I'm sorry to agree with you and ElFatbob, but I think the cash cow is going to be turned to hamburger and sold to the highest bidder out there with no opt-in, opt-out or other consideration given to anyone's privacy. I don't (and wouldn't) trust any level governmental wanker to not step in what the cash cow left in the meadow and then come wipe their feet on our backs.

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Anonymous Coward

It's all about trust

Another place, another century and another government, and an anonymised version might be used as the start of a very long debate. But not here, now and with the totalitarian ghost of Blair still possessing the NuLab Muppets of the day.

Trust - particularly where data is concerned - is long, long vanished and unlikely to reappear in the next generation. Not least till we establish some firm ground rules as to what data is ours to refuse access to, and how that consent is obtained. Until then I'll object to every government freebie hand out of my property to others without my say so.

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Unhappy

Consent IS irrelevant, because...

Our Gordon has found another way to get you on his database. Anyone who does not wish their organs to be taken with assumed consent after their death may soon have to REGISTER that fact. I can opt-in by carrying my donor card. It seems opting-out by carrying a no-donor card isn't on offer. Your only recourse is to get on that huge NHS database, you know, the one we all told our GPs not to upload our records to when we had the (poorly publicised) chance. This whole matter has been so poorly thought-out - no surprise there - that it has driven a wedge between patients and doctors. The Government's attempt to force us into alignment with "the medical good cause" has simply driven us to consider doctors the paid stooges of the lying, money-grabbing, sell-your-granny NooLabour criminals.

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It might be worth it

Why not? I'd pay good money to see the medical records of G Brown, D Cameron, their families and their colleagues in the House of Commons. As, I'm sure, would the tabloid press.

What do you mean "their records won't available for security reasons"?

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Stop

Data miners et al

@All of those of you that are slagging of the labour party .Do you realy think for one moment that the Conservitive party_ wont _sell your records,driving license details car details etc

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