[Closed] Now who's paranoid? (Cameron plays fast and loose with your health data)

Tories in Handing Publicly Owned Things to Their Mates in the Private Sector Shocka!

But your health data isn't 'just' another commodity...

Good. Sharing [b]anonymous[/b] data with the scientific community is invaluable. Insane that it hasn't always been the case.

I'm ok with it so long as it's being used for medical research and not health insurance/NHS assesments.
They may blank the subjects name from the reports (though I doubt this will happen, even if Call-Me-Dave insists they'll do that)

So I'll remain scptical but supportive.

How 'anonymous' will it be? And once the principle is established which other companies or organisations will want to see it?

I don't see a problem with it. It'll be anonymous, so chappie at Pfizer or wherever won't know it was you that got some creamn for an outbreak of the clap in 1998, but surely access to what is basically a massive database of heath issues is a good thing to allow the study of the causes of and possible cures diseases?

I trust this won't be abused.
Nick Pickles is a great name.

Or lost on a train... or hacked...

How 'anonymous' will it be?

All this is covered by the Data Protection Act.

If it wasn't my underlying assumption that the NHS couldn't organise a piss up in a brewery I would have assumed this would have been standard practice for years. Which is my only concern - how good is the data?

It is quite easy to hand over stastical information with absolutely no patient connection as well as anonymous medical histories. I have no problem with either.

Gotta be better than leaving it all on a laptop/CD/memory stick on a train after all...

The government have such a fine record of securing data, I feel confident that there won't be any unforeseen mishaps at all. What could possibly go wrong?

You'd have to be a very cynical individual to be saying that, for example, all the raw data, complete with names, addresses and dodgy ailments will end up available to all and sundry (but mainly medical insurance companies) due to some 'oversight'

I'm absolutely confident I won't be reading that story within 6 months, in an outraged Daily Mail editorial

Is this perchance a desperate bid to claw back some of the 150 squillion quid spent on the NHS database that doesn't, and never will work

The data is definately going to go further within the companies than the Sales dept. There's no doubt that it'll be used in the way that best benefits the entire human race.

Anonymous ... safe/secure handover ... hmm ... probably going to be hand delivered by a gaggle of these ...

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Those of you so opposed to medical companies should take a stand and refuse to use any of their products.

I'm in favour, Tesco knows what, where and when you buy stuff, whichmeans they know exactly how many cabages and sprouts to buy in on cristmas eve. I'm sure Pfizer or GSK could do some good with the data, because anything has to be better than sporuts!

Tesco only know what you buy if you CHOOSE to tell them by having a Clubcard, and no I don't have any of those either. Remember that the uses that a database can be put to are only limited by the moral scruples (or lack of them) of the database administrator.

There's no doubt that it'll be used in the way that best benefits the entire human race

Ye sthey dont want to make money with it these private companies they want to help th eentire race even those who could never afford to purchase their products as they will just give it to poor ill people as they do all the time these days- it was irony wasnt it?

Those of you so opposed to medical companies should take a stand and refuse to use any of their products.

ohnohesback: what makes you think not having a Summary Care Record will have any effect on whether your patient notes are [s]sold[/s] "shared" on?

It's harder to email paper records...

mmm that could make for interesting research. Medical records for a household compared against their weekly shop. I don't suppose it would be revolutionary in that poor diet is likely to increase health problems but it might throw up some surprises.

As for the data/research? It seems like a waste of a good database as long as sufficient security on witholding names is in place. Even post codes should be scrubbed off the record.

I did an NHS-wide survey of use of care records in the non-digitised system and some of you would be horrified by the piles of paper notes, all mixed up in piles over 2m high, impossible to access and essentially lost. This was not uncommon.

If you were called into A&E and youre allergic to a particular type of medication, wouldnt you prefer it if they knew about that by being able to access your health records?

Anyway, back on-topic, I see no problem with anonymised data used for research purposes. Rather that than animal testing any day.

If I felt the need to alert someone to an allergy I'd were a alergy alert bracelet.

There's a huge amount of money in data (look at google and facebook!).

What they are going to hand over going to be very easy to make anonomous but also very powerful. This will achieve two things. One is better research so new treatments, the other is either a cost saving or profit to the government (last I heard we were a little short of money).

Lots of companies in the private sector already sell anonomous data. I know consultancies buy it to help build up background on a particular sector.

I think its a great idea. More of this kind of thinking will help raise money and maybe start to help us get out of this mess. If you can make money from nothing then great. 4G network licences will be coming soon?

I don't see the problem, most people these days voluntarily share more than that on Facebook.

"just got sifalis lols"

it was irony wasnt it?

The companies involved should give a rebate to those who generate the most data.

I don't see the problem, most people these days voluntarily share more than that on Facebook.

The last bunch of inadequates were about to sell our ID Card details off to the highest bidders too.

New government, old issue. Only the threat of losing their seats will stop politicians from flogging off everything they can find.

Tesco only know what you buy if you CHOOSE to tell them by having a Clubcard, and no I don't have any of those either. Remember that the uses that a database can be put to are only limited by the moral scruples (or lack of them) of the database administrator.

or if they track you based on, say, your credit card number.

I don't really see the problem with the whole world knowing what kind of toilet paper I buy so none of this bothers me. The less untargetted advertising thats floating around, the better

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It's harder to email paper records...

You'll still have some electronic records even if you don't have a Summary Care Record. Most hospital trusts have electronic systems for ordering blood tests, scans etc.

I did an NHS-wide survey of use of care records in the non-digitised system and some of you would be horrified by the piles of paper notes, all mixed up in piles over 2m high, impossible to access and essentially lost. This was not uncommon.

I do laugh at people talking about the security of electronic copies when the paper notes are just left lying around.

Plus with the current system I'm sure it would be quite possible to blag copies of paper notes with enough confidence and a suitably credible sounding phone call.

I do laugh at people talking about the security of electronic copies when the paper notes are just left lying around.

The less untargetted advertising thats floating around, the better

I was idly wondering about this the other day. Plenty of web sites now let you opt in / out of advertising tracking. The instinct is to opt out, but (assuming you aren't removing adverts) the choice really is "would you like random adverts or something you might be interested in?"

I pay in cash so that I don't leave a slug trail of data.

I don't really see the problem with the whole world knowing what kind of toilet paper I buy so none of this bothers me.

If I felt the need to alert someone to an allergy I'd were a alergy alert bracelet.

So you have an issue with Dr's and nurses knowing your alergic to pennacilin, but would happily wear that info on your wrist?

On a related note, Topman are selling blank charity wristbands, WTF?

I pay in cash so that I don't leave a slug trail of data.

One in twenty banknotes is contaminated with coke apparently (BBC news last week), so the only data we can assume from that is you have a problem if you need that many bank notes :p

Well I don't have an allergy so the issue doesn't arise. My issue is the confidentiality of MY data and MY RIGHT to ensure that it doesn't get spread everywhere.

Well I don't have an allergy so the issue doesn't arise. My issue is the confidentiality of MY data and MY RIGHT to ensure that it doesn't get spread everywhere.

I pay in cash so that I don't leave a slug trail of data.

Well in answer to the question in the title, "you are!"

Some people understand, but many others don't. The analogy I'd use is that of boiling the frog, if the heat is increased slightly over time the frog won't realise that it is being cooked until it is too late. As I pointed out earlier, once YOUR data is in electronic form THEY could use it for whatever purpose they choose to.

No doubt you'd have no problem with them knowing what sort of food you buy, or how much alcohol you buy either, it all seems so innocent, until the day that some obsessed self-righteous state decided that your lifestyle is 'unhealthy' and decides that you need to be 're-educated'...

I wouldn't really mind that either. If I was leading a balanced life, and I go to the doctors with high blood pressure, it'd be good (in my opinion) if they could have an accurate picture of my diet/lifestyle rather than having to question me. Having been in that situation, even the question 'how many units of alcohol do you drink' is quite tricky to answer. I can work it out for last week, but is that an average week? who knows? do I eat a lot of red meat? a lot of salt? it doesn't seem like I do, but if someone wants to keep track, and can re-educate me on how to be more healthy, I'm game

I really do worry about many people...

I pay in cash so that I don't leave a slug trail of data.

They track the serial numbers for the notes.

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😀

But as the notes pass through many hands that would ensure your anonymity...

The analogy I'd use is that of boiling the frog, if the heat is increased slightly over time the frog won't realise that it is being cooked until it is too late.

Sadistic frog murderer!

On a similar note, what about your health records? You might not notice a gradualy increacing trend of coughs over time, but a great big number crunching computer might spot the pattern and book you in for a checkup to see if anything more serious is up.

I'd not go as far as the tabloid mantra of "privacy is for pedos", but if in the long run this makes the NHS some money and results in better drugs/healthcare I'm in favour.

Some people understand, but many others don't. The analogy I'd use is that of boiling the frog, if the heat is increased slightly over time the frog won't realise that it is being cooked until it is too late. As I pointed out earlier, once YOUR data is in electronic form THEY could use it for whatever purpose they choose to.

Except the analogy isn't true, but I like the general gist of it.

But ultimately, providing my data is abstracted from my name, I don't give a damn what they do with it. The moment they choose to link the two I'll complain.

I wouldn't really mind that either.

Good job legislation works, eh?

It's too late anyway...

How can you overcome this? How can you keep your data as private as the day you were born? In my best selling book, only £50, I'll tell you ...

But as the notes pass through many hands that would ensure your anonymity...

No that's where you wrong it's when they get in your hands they start tracking.

You should be paranoid - everyone else is.

Drac: I use a Sharpie to change a couple of digits on every bank note I get. It's the only way to be safe 😀

I use coins only and soak my fingers daily in fresh pineapple juice.

Make sure you grow your own pineapples though. The shop bought juice is laced with [url= http://www.smar****er.com/Business.aspx ]Smar****er[/url]

I have them flown in by unmarked jets, a black ops team parachute in with crates of them every other week.

I've said too much I better go.

They want to charge you a life insurance premium for your alcohol intake. They want to make you pay extra tax for NHS if you consume alcohol. EVERYTHING is enabled, only legislation is preventing it.

Why shouldn't health insurance premiums be linked to lifestyle? Insurance is based on risk so why should the company not have all the facts before deciding your premium?

Insurance is based on risk so why should the company not have all the facts before deciding your premium?

Because they will then refuse to insure anyone with any medical condition?

It's bad enough already with "declared illnesses".

Diabetes adds a fair bit to the Mrs insurance costs and means some activities are completely off-limits - even though there is often no perceptible increase in risk.

My issue is the confidentiality of MY data and MY RIGHT to ensure that it doesn't get spread everywhere.

You know what "anonymous" means, yes?

Also, y'know, when you start talking about THEM in capital letters, you sound like a fruitcake. Sorry. Are THEY monitoring your conversations from the moon using tiny transmitters in your fillings?

Because they will then refuse to insure anyone with any medical condition?

It's bad enough already with "declared illnesses".

Diabetes adds a fair bit to the Mrs insurance costs and means some activities are completely off-limits - even though there is often no perceptible increase in risk.

they won't refuse to cover, but cover will be more expensive. On the flip side, for those of us without conditions, the costs will go down. I'd be happy with that as I don't have a condition that makes me as risky

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they won't refuse to cover, but cover will be more expensive. On the flip side, for those of us without conditions, the costs will go down. I'd be happy with that as [b]I don't have a condition that makes me as risky[/b]

yes, it is, but if my lifestyle is more risky, its only fair that if I want insurance for that lifestyle, I pay more.

insurance companies will provide a cost that matches their cost model plus some overhead. Insurance is a massively competative market, so if they can make better decisions with the data available, I'm all for it. The average cost of insurance would stay the same, but it'd be spread more fairly among those who make the ins companies pay (incidentally, with high blood pressure and a habit of breaking bones, I'd probably pay more for insurance, but I normally self insure anything I don't legally have to pay for, as its cheaper in the long run)

Because they will then refuse to insure anyone with any medical condition?

It's bad enough already with "declared illnesses".

Diabetes adds a fair bit to the Mrs insurance costs and means some activities are completely off-limits - even though there is often no perceptible increase in risk.

Just like car insurance then? A 17 yr old driving a modified Scooby WRX STI T-UK with 9 points on his licence pays more than a 40yr old woman driving a 8yr old nissan micra 1.0. A 80yr old diabetic extream sports fanatic who rides a ducati 1199 to work every day paus more than a 25yr old vegiterian budhist monk.

As for the "no perceptible increase in risk", they prosumably have statistics to show otherwise? If not, just go insure yourself with their competitors as clearly they're chargeing too much.

The NHS treats everyone based on need and is paid for by everyone based on ability. Insurance pays out on the same basis, but is paid for on the basis of risk, so yes, a diabetic is more likely to nrequire diabeties related treatments than a non diabetic, and should pay more accoridingly.

insurance companies will provide a cost that matches their cost model plus some overhead

Technicaly no, the premium is based on the cost of treating you/odds of you needing treatment, but the profit (and some of the premium) comes from bunging that money in the stock market and hoping for the best. Hence pensions are run by insurance companies, they're insurance against you reaching old age (you dying before retirement is the same to an insurance co as you making it to 12 months without crashing your car).

Markets crash, insurance goes up.

they won't refuse to cover, but cover will be more expensive.

In the past MrsGrahamS has been completely refused from certain activities (i.e. parachuting, scuba diving, shark swim) on the grounds that she has diabetes so they can't insure her.

Offering to sign a waiver etc doesn't work.

(Fortunately MrsGrahamS is also a diabetes and endocrinology specialist so getting official sanction from a suitable medical professional isn't too hard and this usually carries more weight).

Insurance pays out on the same basis, but is paid for on the basis of risk, so yes, a diabetic is more likely to nrequire diabeties related treatments than a non diabetic, and should pay more accoridingly.

Nice - so you're happy for it to be cripplingly expensive for people with medical conditions to do anything, as long as it is cheap for 100% healthy people to do stuff.

I suspect that attitude will change as you get older!

Even when data is aggregated and anonymised it is best practice to gain informed consent from research participants. Nobody has asked me if it is ok for my medical data to be given to a third party, therefore the assumption should be i don't want it shared until the point i say it is ok.

5thElefant - Member
Good. Sharing anonymous data with the scientific community is invaluable. Insane that it hasn't always been the case.

POSTED 2 HOURS AGO

CaptJon - Member
Even when data is aggregated and anonymised it is best practice to gain informed consent from research participants

Doesn't NHS data sharing already happen in Scotland?

It has been for years. How do you think medical researchers come up with all their stats?

Thats interesting, I was taken on for some medical research and they said they couldn't use medical records which is why they had to conduct live trials. I presume it's different for different sorts of research though. I'll ask the medical statistician I know, they'll give me a difinitive answer.

Talking of health were on page 2 of this and no TJ - is he ok?

It amazes me how paranoid people are in this country about data and how ill informed they are. Do you not think that your bank, or mobile phone operator don't use and sell your data. Your bank and insurance details are widely passed around between firms and government to control the financial world. How do you think credit scoring works or the rules around the number of ISA's you can open. I used to work in IT for a large bank and every night data would be sent to the government and credit scoring agencies all about the activity that went on that day. Its completely normal and how the system works.

Is it not brilliant that a huge data source is going to be used to help develop better medical products. All this data is in paper format at the moment and can be viewed by anyone in the NHS so by putting it on a computer makes no difference.

For one as mountain biker (therefore with an increased risk on injury) I hope to god my medical records are online so if I ever have a serious accident A&E can get the details asap without having to first find out where I live, then which NHS trust I come under, then fax a request for my details, then for someone to go into a large warehouse and find my file and then fax back my details. It's just so bloody archaic.

The amount of money that is wasted by tests having to be repeated and duplicate appointments because data is not shared. My dad has a genetic condition that is looked after by a London hospital and each 6 months they do a vast array of test on him. But when he goes to the heart and kidney doctors in Bristol they do all the same test again, sometimes even just a couple of days later as they can't see the records from London. Bloody madness and a complete waste of money. We are not talking a few blood test but full MRI's and ultrasounds. In Bristol there are 2 NHS trusts and my dads doctor is under 1 and the dialysis unit is under the other. Every other day he has blood taken and tested. But the NHS trusts don't share data so when the doctor wants a blood test, instead of him having to have another appointment he just asks the dialysis nurse to take 2 vials of blood and then he walks across the road and drops the second vial off for the doctor to test. This happens every couple of months. 2 tests for exactly the same thing, its a bloody joke.

It get around the problem they should just offer free Club Card or Nectar points to anyone that allows their date to be sold. I bet the issues and public concern would vanish overnight!!!

avdave2 - Member

Talking of health were on page 2 of this and no TJ - is he ok?

Been asleep.;

I have no summary care record and would not have one. I object to this sharing of data on two grounds, the possibility of a breach of confidentiality and that they medical research companies should be paying for this data

woody - the problems you describe is what happens when trusts compete. here there is online traking for all hospital based testing available to any medical bod dealing with you. Dunno how wide it spreads but certainly all the lothain hospitals us the same system.

One of the reasons why cooperative not competitive hospitals are a good thing.,

thats totally different from the idea of giving away our confidential data

I've no problem with my data being shared anonymously if it is going to be used to benefit society as a whole, unfortunately the cynic in me can't help thinking that the complete opposite will end up happening.

If I start getting calls from some overseas call centre offering me a good deal on a new kidney as mine is looking a bit dodgy I'll be most upset. (On Saturday I was told that the system had some very serious messages from my computer, then asked who told me I don't have any Windows PCs in my house!)

TJ

I agree it is madness that trusts compete. The whole trust setup is madness and a waste of many. Did you know there is an NHS trust that does no medical procedures but exists to just support the other trusts. There is also an NHS trust lobbying body!! Its administration and bureaucracy for the sake of it.

I think people in this country just have a very selective view on the use of their data. If it saves them money (Tesco Clubcard) then great they are all for it but if the NHS is mentioned they become irrationally paranoid.

There is implied consent when you agree to a clubcard/nectar/other loyalty card.

Not when you go into hostiple for whatever...

I don't have a clubcard for that very reason. I usually pay with cash, I never give my details voluntarily, I have a stop on my data with experion and equifax, I don't have a mobile phone, I do my best to share as little data as possible.

Its surprising how much you can opt out of if you want

Its surprising how [s]much you can opt out of[/s] pointlessly difficult you can make life for yourself if you want

😀

I have the same issues with being tracked. They're all out to get me. As well as jettisoning my phone, credit cards, loyalty cards etc, I've gone to the extent of forsaking even cash. I now barter for goods and services. I have a sore bottom now though 🙁

I have a sore bottom now though

And yet, no cash left hora's wallet. 🙂

Nice - so you're happy for it to be cripplingly expensive for people with medical conditions to do anything, as long as it is cheap for 100% healthy people to do stuff.

I suspect that attitude will change as you get older!

No, you missed/didnt read/ignored this bit

The NHS treats everyone based on need and is paid for by everyone based on ability. Insurance pays out on the same basis, but is paid for on the basis of risk,

As it's based on risk are you telling me that:

parachuting, scuba diving, shark swim

Are low risk activities? I'm not aware if diabeties makes them much (if at all worse) but if you told me you were diabetic, swimming with sharks and parachuteing I'd probably think twice about offering you health insurance! You certainly don't fit into the same category as the budhist monk mentioned above. Should Budhist monks pay more (assuming they have privat health care) to cover everyone else?

as long as it is cheap for 100% healthy people

I'm not 100% healthy, and I wouldn't expect any health insurance cover I took out to cover my knees for example as the right one was injured a few years ago and therefore a higher risk of future problems. If I wanted my knees covered I'd ahve to accept a higher premium based on the higher risk.

As it's based on risk are you telling me that:
parachuting, scuba diving, shark swim
Are low risk activities?

Actually they are not too bad in terms of actual risk of harm, but moving on.

I'm not aware if diabeties makes them much (if at all worse)

[u]Exactly[/u] - for her condition it makes absolutely chuff all difference to the risk, but she was unable to do these activities "because of her health".

If every aspect of your health was under similar scrutiny then only 100% fit people would get to take part in these activities as they'd be the only ones covered by the insurance.

I'd probably think twice about offering you health insurance! You certainly don't fit into the same category as the budhist monk mentioned above. Should Budhist monks pay more (assuming they have privat health care) to cover everyone else?

Aaah so now we're including "risky" activities as well as "risky" health? So how much extra would health insurance for mountain bikers cost? People who eat fish and chips? Drivers? Drinkers? ITV watchers?

I'm not 100% healthy, and I wouldn't expect any health insurance cover I took out to cover my knees for example as the right one was injured a few years ago and therefore a higher risk of future problems.

It's not just "health insurance" though, I'm talking liability and event insurance. Imagine if your dodgy knee meant you couldn't compete in any MTB races or couldn't use any of the 7 Stanes because you didn't fit into the 100% healthy category they have insurance for.

Aaah so now we're including "risky" activities as well as "risky" health? So how much extra would health insurance for mountain bikers cost? People who eat fish and chips? Drivers? Drinkers? ITV watchers?

More than the nominal 100% healthy person.

Imagine if your dodgy knee meant you couldn't compete in any MTB races or couldn't use any of the 7 Stanes because you didn't fit into the 100% healthy category they have insurance for.

Then I'd sue the owner/insurer of the land I crashed on damageing the knee for enough to cover the future costs as a result of the injury.*

*Irony and sarcasm travel slower than broadband so be aware I may not be being serious.

On a serious note I walways declare my knee and back injuries and childhood asthma when joining a new gym or when asked and have never been refused entry.