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back to article UK ramps up health über-database

Napoleon called the British a nation of shopkeepers, but we'll be nation of statistics if UK Biobank has its way. It's a scheme backed by the Government and the NHS, and by major medical NGOs and charities, including the Wellcome Trust and the British Heart Foundation. Its aim is to evaluate the lifestyles of half-a-million …

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Database Crazy

I was "invited" (actually an appontment was sent to me simmarily,with several hoops to jumo through should I wish to decline).

At first it seemed like a good idea. I don't live far from the hospital, and don't have a fear of various medical tests.

Attending the appointment, ad the University Hospital of Wales, wouild merely mean taking a half-day (unpaid) off work, and leaving the company short staffed in the IT dept. (er.. thats me!) It would be easy to either walk a couple of miles in the rain to the hospital, wait for a few hours, get prodded and give up my secrets, physical, psychological, and sexual, then I too could have had a (possibly) free but-disgusting instant coffee, trudged back in the rain with blood/bruising down my arm, possible MRSA and whatever else diseases the patients had borught in that day. No problem.

I/could/ have ridden over on my lovely motorcycle, however, "Car Parking" at the hospital is stricly controlled by a private company, with an Italian-sounding name, that I expect would either fine or clamp whilst ribbing their sweaty little hands in glee. Or I guess I could "Pay and Display".. Oh.. Can't really do that with a motorcycle, cos the tickets tend to just "dissapear" into nearby cars. And I wouldn't be at all suprised to find both fine and clamp (and subsequent damage to every expensive aluminium/wire race wheels) as a reward for my payment. The streets for miles around are "Residents Only".

I must confess, the proposition was not /that/ attractive, however, progress and all that.

NuLabr had been banging on about getting everyone into as many "joined-up" databases, so that the populations every thought could be tracked from womb to grave, so, after having the priviledge of "participatign", I'm sure the government would never simpyl change the law, and add the participents DNA samples and other personal details to the uber-database, burn it onto CD/DVD in Excel format, and leave copies on the shelves in Tesco by mistake. Or would they?

So I decided to decline anyway.. But the phone number to cancel was always answered (at my cost on mobile - the only phone I have)) by a machine that told me that nobody was available at the moment, and asked my to call back, the web site did not work (under Linux, which is all I use!) and there was no SAE.

I gave up.

Whole project is a masterpiece of mis-engineering. A bit like everything else really.

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Is there a betting pool?

Can we place bets on how long it will be before the police get access to this data? But of course only to combat terrorists/paedophiles/drug dealers/witches/whatever the latest scare story is.

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Re: Fragula

I went through this last year, and I'm pretty sure they made it clear that reasonable travel expenses would be covered for attendees. I'm assuming that your rant was originally in Welsh and then translated (badly) by some automated system? Whatever you used I'd change it as it's spelling is awful. Alternatively you may need a thicker tinfoil hat?

As I did go through this perhaps I should say something about the process. I too had a feeling of anti-climax at the end, but otherwise the process was extremely professionally handled. Any concerns about any of the procedures were carefully explained and were all optional. My company were very supportive of the process and I got time off to go along.

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I was 'invited' too ...

... but then I read their privacy and information processing terms and decided I didn't like it. It seemed that they would be able to just hand my data over to that great big ID database that the Gov are always going on about. Sadly, 500,000 DNA records would be just too tempting IMHO.

Not for me.

I'd have done it anonymously but they just had to link my personal details with my DNA. It shows that the project has no clear idea of what privacy really is.

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RW
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Self-selected statistical samples

Real statisticians go to great lengths to use true random samples of the population under study. Otherwise, unknown biases will make any conclusions you draw of doubtful validity.

Sounds to me like they didn't have any statisticians involved in the design, at least not in a meaningful way. Betcha some bean-counter or management wonk designed the data capture without regard to such niceties.

Fragula the Furry has it right in calling this "a masterpiece of mis-engineering."

PS: I wouldn't be surprised if they intend to use some piece of cheap, crap, copy-cat software to carry out the statistical analysis: there are stat packages out there that generate very wrong answers because the calculations aren't right down inside.

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I too declined their offer

For much the same reasons. I don't mind contributing to the general pool of medical knowledge but there was just too much personal downside. The location was inconvenient, the info they wanted was too intrusive, and their childlike confidence in the privacy of my data was touching but misplaced. They were not even going to tell me the results of all these tests.

The area where I live seems to have been targetted for Biobank recruitment and I know three other people who have similarly turned it down. This project is going to collect significantly skewed data from a cohort of self-selecting subjects carrying the altruism gene.

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Anonymous Coward

Will they find the cause of sadness

In people delighted to give their DNA to Biobank in order to get all that (actual real) attention in the process? I thought not. Another thing they will not find is the cause of scepticism.

I was invited - much to my disgust. Also declined for reasons of privacy.

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Anonymous Coward

University hospital of wales

Spot on about travel and parking, especially the parking.

The private company that runs the parking closes the car park to run a park and ride scheme whenever there's a major event on in Cardiff and usually most weekends in December. I've actually witnessed them telling staff arriving for a night shift to move their cars as there's a park and ride scheme running the next morning. They've consistently removed staff parking places (which get a disocunted rate) too so that nurses have to walk through an unlight area with a history of attacks to get to their cars. They also introduced a scheme where parking charges for the month were deducted from your pay in advance and there weren't enough parking spaces for the staff and no allowance for leave or people car sharing etc so you ended up effectively paying more for the parking and no guarantee you'd find a space.

There has been at least one reported case of a surgeon cancelling an operation as he couldn't park.

You just have to love PFI etc or whatever they called the scheme.

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@RW real statisticians

... know what random sampling means, when to use it, and what can legitimately inferred from non-random samples. Which is quite a lot, especially in terms of probing a large dataset for hypothesis-generating associations. And believe me there are plenty of real statisticians on this project which is probably the largest and best planned piece of medical research ever undertaken in the UK.

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Coat

Not too sure...

... how this is a good thing when viruses (we hope computer related) can wipe out 3 London hospitals for almost 2 weeks...

Although a nationwide database of medical records can only be a benefit if you fall ill away from home and need medical attention where your details and any specific medical issues you may have are easily accessible from a central database, we only have to wonder how long it is before some F*cktard from the NHS leaves a copy on a train somewhere for all of our ailments to be advertised on the internet for Phorm to spam us for better treatments from everything from pile ointments to cheaper opiate based painkillers for backpain...

The white one please with the stethoscope in the pocket

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Re: Is there a betting pool?

Christoph asked: "Can we place bets on how long it will be before the police get access to this data? But of course only to combat terrorists/paedophiles/drug dealers/witches/whatever the latest scare story is."

It really would be unfair to take bets on this. Legislative powers are about to be taken to ignore data protection and all other inhibitions to Government using data provided for one purpose for whatever other purposes they can dream up. It will be included in the Coroners and Justice Bill that was announced by Her Majesty the other day.

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Unhappy

You trust these people?!?

Anyone who trusts information to an organisation that "pledges" to "look after" such data, warrants a statistical study - an analysis of naive idiots.

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@ Hilary

Having declined myself and with you seeming to be in the know I wonder if anyone stopped in the planning stage to ask how people would feel about this or was it just taken as a given everyone would see it as the wonderful research project everyone on the project perceived it to be?

Certainly everyone I know of who had an invitation (5 people) declined or just didn't even bother answering it, now that may well be a skewed sample, but I'd have to infer a high dropout rate.

Now you may still end up with a large sample on the basis you expected a massive dropout rate so massively oversubscribed the service, but statistics works both ways so the drop out rate must have some bearing on any hypothesis you infer.

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Anonymous Coward

Measurements

When I did it, my waist measurement (and my weight) were taken by a nurse who'd obviously had a failed career as a tailor, leading to an interestingly inaccurate BMI

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Data security

I was also invited to take part, and asked for more information about the project's data security before committing myself. I didn't get any reply to my request so didn't take part. Shame - I would have liked to help.

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