Sharing medical records outside the NHS

[alternageek]

Im all for the NHs sharing my information internally so the A&E doctor can see what medications Im currently on. Or the consultant Ive been sent to see has full access to my files, so they can decide whats best for me. This is good sharing.

 

Im not okay with my information being sold on to pharmaceutical companies and the like, even if its for the so called greater god (it never is, though). If they would like people to volunteer as a test candidates for medication or treatments, then so be it, but dont just give away my private details.

[altus]

So you think an insurance & employment blacklisting company are going to pose as a drug company to get the data? or the private investigator that your wife hired? Maybe the drug companies will resell the medical records, after tracing everybody in the country to add the names back to the list?

A few straw men scenarios there.

 

If the information is so important to the drugs companies, why don't they fund a scheme to inform people about it and get them to opt-in to their information being used in that way?

 

Informed consent for gathering personal data is a requirement of EU law - although this country's governments seem to think personal data should be available to any commercial concern who wants it and individuals should have no rights over it. (c.f. BT and Phorm intercepting communications, foot dragging over cookie laws, etc.).

[Mecky]

Just another example of an appalling decision made by an appalling government. They are just testing the water ahead of privatisation.

[ganainm]

So you think an insurance & employment blacklisting company are going to pose as a drug company to get the data? or the private investigator that your wife hired? Maybe the drug companies will resell the medical records, after tracing everybody in the country to add the names back to the list?.

 

Yes! Insurance and employment companies already go out of their way to do background check on finance, blogging, FB activity, Twitter posts etc some do health checks prior to insuring or employing. I've been asked for my FB and Twitter account, and for permission for a review of my medical records, on a job application for a part-time job. Imagine What they'll do if they already know your full medical history before you apply?

 

If they can find people from their medical histories, then so will anyone else who wants to get access to the data sets, and there would be plenty of people wanting to sell it on and buy it.

 

Worse still are those who will use your medical history against you, blackmailing you not to tell your partner your history, finding terminally ill people and taking advantage with promises of quack cures (there are enough of these already), publicising medical enhancements of famous women (not that they are difficult to spot).. and these are just a few of the minor issues. I'm sure there would be more given time to think..

 

But if it is truly anonymous, then the benefits to research are huge. Instead of having limited access to control groups, they'll have full access to symptoms, treatments, side-effects, outcomes across the whole spectrum of ages, sexes and many many other factors.

 

Yes, "big pharma" will use it, but they will also be under greater scrutiny as a result of the records, showing the true effects of their products, matching their claims or highlighting their failures. And that's just the start of it.

 

Ah, my apologies for going on so, I'll stop here before I make this too long, if it isn't already..

 

Gan

[ricgem2002]

this thread has been done before

[anywebsite]

Yes! Insurance and employment companies already go out of their way to do background check on finance, blogging, FB activity, Twitter posts etc some do health checks prior to insuring or employing. I've been asked for my FB and Twitter account, and for permission for a review of my medical records, on a job application for a part-time job. Imagine What they'll do if they already know your full medical history before you apply?

 

They would still have to break the law (or ask you) to get your medical records. This isn't a proposal to sell all your medical records to any employment agency or insurance company that wants them. They're only selling the info to drug companies.

[anywebsite]

Big brush approach required, as this is a topic requiring encyclopedic volumes. In a nutshell, because pharma R&D is essentially a scattershot approach (by the biggest players, spreading bets (sorry, R&D funding ) on many, many, many projects) and all the market competitors do R&D, everywhere, at any moment in time. Note that this comment excludes the issue of generics manufacturers, which is also non-trivial in context.

 

Even if they're just gambling as you say, they wont win a prize without buying a ticket. Saying R&D has no influence on developing drugs is nonsense.

 

Giving them everybody's medical records will help them to decide where their R&D would be best spent. Maybe they'll find out that current treatments for some illnesses aren't as effective as they could be.

 

Well, that would depend on what/how far that 'anything' is and goes, wouldn't it? I mean, why anonymise the data? It would be better to preserve that data for research on hereditary ailments/conditions, no?

 

It would be better, yes, but look at the responses from all the tinfoil hat wearers so far & think how bad it'd be, politically, if they didn't anonymise the data. I'm still the only person that voted 'Yes, in any form' on this poll.

 

Can they? Do they have it? Then what non-news is Cameron on about this morning?

 

Yes, people can break the law & be corrupt now, if they want to. This will make no difference to that. I suspect that the current government bureaucrats who control the data now would be easier & cheaper to bribe than a large drug company for anybody wanting to obtain the data illegally. Public sector employees have already proved themselves quite capable of having no data security policies then misplacing unencrypted laptops, usb sticks & dvds without any private sector involvement.

[anywebsite]

A few straw men scenarios there.

 

If the information is so important to the drugs companies, why don't they fund a scheme to inform people about it and get them to opt-in to their information being used in that way?

 

Informed consent for gathering personal data is a requirement of EU law - although this country's governments seem to think personal data should be available to any commercial concern who wants it and individuals should have no rights over it. (c.f. BT and Phorm intercepting communications, foot dragging over cookie laws, etc.).

 

It isn't personal data any more if they anonymise it.

[Rupert_Baehr]

I accept L00b's arguments (and concerns) about identified (or identifiable) data, but IMO, there are other considerations.

 

I worked for 'big Pharma' as a Mass Spectrometrist (in R&D) for about a year at the end of the 1960s. The amount of money spent on R&D is vast .. and the number of effective drugs produced is very small.

 

If a company decides to do research into a drug to treat disease 'A' then money (huge amounts of it) is allocated. The researchers have a pretty good idea what types of compounds are likely to be effective, but that's 'early days'. Getting a drug from inception to the market place costs huge amounts of money (and that money will eventually be paid by the customers.

 

What if:

 

You have a compound which works well against one particular disease, but which is obstructed by the medications used to treat another? (Or even worse, which causes horrendous damage when used to treat certain people?)

 

Do you remember thalidomide? Thalidomide was introduced as a sedative. Nobody knew what it would do to foetuses. Thalidomide is still used in the treatment of leprosy (where it appears to work well.) It has a number of other uses.

 

The manufacturers were hammered (quite rightly) but if another drug was to be produced which had side effects in a group of people who suffered from both the disease which that drug was designed to cure and another unrelated disease and if evidence of the contra-indications of that drug was available but denied to the manufacturer, who should be held to be liable?

 

Hypothetical example:

 

300 patients. Each of whom has disease A

Each of whom also has disease B and or C and or D and or E.

 

There is a drug which works for patients who have disease A alone and also works for patients who have disease A and disease B.

 

It doesn't work so well for patients with disease A and disease C.

 

It causes harm in patients who have disease A and disease D.

 

It negates the treatment for disease E given to patients who suffer from disease A and disease E.

 

This information is available. Doctors have computerised records and it isn't too hard to scan the records to work out what does what to who.

 

But we're not going to tell the people who make the drugs, because that information could be useful to them!

 

The fact that it might help them to make better more efficient drugs is irrelevant.

 

In theory (and the theory doesn't work ) my complete medical record is held on a computer file accessible to all of the providers who have access to the system in which I'm enrolled. So if I got to see a doctor or am treated in an hospital 'known' to that scheme, they have instant access to the whole story. It's a good idea (and it would be even better, if it worked )

 

AFAIK, there are already laws in place (in some places) and in the pipeline in others to prevent people from gaining access to certain information and using that to discriminate against people. It would be unconscionable, for example, to allow an 'uninsurable underclass' to arise through dissemination of genetic profiles. Those laws should be strengthened and enforced rígorously.

 

It's also been argued that employers should not be able to use medical history to decide whether or not to employ somebody.

 

Really? I used to fly aircraft for a job. My employers were certainly interested in my medical history and I was obliged to undergo annual medical exams. Failing a medical meant 'end of job.'

 

I don't think that's entirely unreasonable, do you?

 

We are each entitled to our privacy (human rights act) but others are entitled to know whether they are safe when we are responsible for their care.

 

I don't actually give a damn whether you know that Rupert is an hypertensive hyperlipidaemic diabetic (though I have the right to be upset if somebody else told you.)

 

Would I also have the right to object to 'big pharma' knowing that 'patient A' [an unidentifiable patient] is an hypertensive hyperlipidaemic diabetic who responds well to treatment with glimepiride and janumet, but responds adversely to statins, is poisond by lizard spit (or the synthetic alternative) is often immune to insulin, tolerates niacin in huge doses (I could go on ...)

 

I suggest that if unidentifiable data on a vast number of patients was made available to 'big pharma' then they would have tools which would better enable them to make more efficient drugs at far lower costs. Those costs could be passed on to the consumer. The pharmaceutical industry receives huge amounts of money, but (and they do indeed make huge profits) it's not all profits.

 

The profit is still a fraction of the cost and if you can reduce the cost, you're in a better position from which to negotiate lower prices.

 

IMO, releasing the data is not the problem. Breaking the link between each data set and the patient is the problem.

 

I'm a type 2 diabetic. (Lots of those around.) I have a glucometer (Lots of those around, too.) It was registered with the manufacturer (I got it free and registration was the price.) I'm also imaginative, so I imagined a registration address.

 

In the past (when I was less cynical) I registered my glucometer using my real address. I was plagued with 'offers' to provide test strips at reduced cost (I get mine free, so I was not interested.)

 

If you happen to have - for example - Onychocryptosis (no, I haven't got that one ) and you're daft enough to log on to a website, you'll probably be plagued with offers of 'cures'.

 

I don't really care whether people know what diseases I have ... just as long as, should somebody pick me up from the side of the road (or some other place) they - the carers - can get immediate access to my chronic problems and any drugs I should not be given.

 

I would be more than happy to have my full medical record (in a form which is not traceable to me) given to pharmacological researchers to enable them to make better drugs to treat me at lower cost.

[L00b]

Even if they're just gambling as you say, they wont win a prize without buying a ticket.

Of course, but...

Saying R&D has no influence on developing drugs is nonsense.

...I didn't say that.

 

What I said was that access to personal data will not "speed up" research output (as alleged by the Gvt and/or Tony in the OP). For the reasons elaborated upon at great length by Rupert (great post, RB, as usual).

 

It will only (hopefully) influence what research is done. This can be a good thing, or a bad thing - that will depend on what/how funding prioritisation is done, who/how many will benefit most, and a whole host of further factors (profitability first and foremost) which the Gvt won't know the first thing about, or have the first thing to say about (as the 'proposal' currently stands).