Sharing medical records outside the NHS

[Tony]

There's a proposal going around to share everyone's medical records outside the NHS. Now I'm not really too concerned who laughs at mine if they are anonymised, but you might feel differently of all sorts of reasons.

 

The government want to do this to speed up medical research and the time it takes for new treatments to be made widely available. The NHS 'cradle to grave' system means that there is an unrivalled data set going to waste.

 

This proposal makes a lot of sense both medically, and because it will boost UK research, science and technology industries.

 

However, I'm struggling to see how this will work because at the moment a doctor in A&E can't even get to your medical records when you get wheeled in with a life threatening injury.

[altus]

You forgot an option for "Yes but only with implicit informed consent and an opt in for this purpose."

 

There are two problems with proposal:-

 

1. People might have been happy to allow their data to be added to the NHS summary care record system but are not happy about it being used for commercial purposes.

 

2. How anonymous is the data passed really going to be. There have been many cases of peoples identity being derived from supposedly anonymous data. If they really want to ensure that the data will really be anonymous, they should get some security experts who are hostile to the the idea to define how the data should be anonymised.

[mj.scuba]

I don't see why patients need to be informed if anonymised data is to be shared. Surely the 'owner' of the data is the NHS, not the patient.

[Tony]

What would it matter if you could trace those people?

[altus]

What would it matter if you could trace those people?

Insurance premiums, job prospects, implications of it getting out you've been treated for STDs, etc.

[anywebsite]

Insurance premiums, job prospects, implications of it getting out you've been treated for STDs, etc.

 

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?

 

The possible objections seem paranoid.

 

It could help new drugs & treatments to be developed.

 

It will help to cut the cost of the NHS without compromising patient care & might even improve it in the long term.

[L00b]

The government want to do this to speed up medical research and the time it takes for new treatments to be made widely available.

I'm singularly failing to understand how such a dataset, anonymised or not, would "speed up medical research and the time it takes for new treatments to be made widely available"

 

All it would do is help Big Pharma validate fragmented private datasets (established from polls, clinical trails, etc.) against a real-life 99.9%-reliable dataset.

 

From which, expectedly, they will be able to better define and prioritise markets (therefore, R&D expenditure). But prioritising R&D expenditure does not necessarily accelerate viable, economically-significant R&D output (as in: there is still little to no correlation between the two).

 

And the paranoia-type arguments are not without merit. We all know what happens to sensitive/valuable datasets these days, don't we?

 

'Numbers are bit low this month, lads, so what do you say we "lose a laptop or USB stick on the train" for a big fat brown envelope'

 

TBH, when I first heard this on the news this morning, it sounded to me like some Big Pharma lobbyists' prose, straight in one of Cameron's ears and through past his mouth, with little consideration for matters of policy/sense/public interest.

[anywebsite]

I'm singularly failing to understand how such a dataset, anonymised or not, would "speed up medical research and the time it takes for new treatments to be made widely available"

 

All it would do is help Big Pharma validate fragmented private datasets (established from polls, etc.) against a real-life 99.9%-reliable dataset.

 

From which, expectedly, they will be able to better define and prioritise markets (therefore, R&D expenditure). But prioritising R&D expenditure does not necessarily accelerate viable, economically-significant R&D output (as in: there is still little to no correlation between the two).

 

If there is no correlation between R&D spending & output, then why do any drug companies bother with any R&D?

 

Surely anything that helps them have better data for research & helps them to prioritise their spending is a good thing?

[anywebsite]

'Numbers are bit low this month, lads, so what do you say we "lose a laptop or USB stick on the train" for a big fat brown envelope'

 

But they can do that now, the data already exists, I don't see how this proposal would make that scenario any more likely.

[L00b]

If there is no correlation between R&D spending & output, then why do any drug companies bother with any R&D?

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.

Surely anything that helps them have better data for research & helps them to prioritise their spending is a good thing?

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?

But they can do that now, the data already exists, I don't see how this proposal would make that scenario any more likely.

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