The day the (medical) data broke free…

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Today is a good day for data – at least in healthcare. At last the data from the NHS is being set free.

For my international colleagues and friends it’s worth pointing out some things about the NHS.  The UK National Health Service* is actually a very large and complex organisation that cares for health needs. The main arms are the GP services and the Hospital services.  GPs are self employed and effectively contracted by the NHS. Hospitals are islands to themselves within regional groupings.  Above all lie funding and commissioning structures. Sounds complex? From a data perspective it certainly is. The data that is generated by the system is often written, frequently in isolated systems, and is barely there for joined up services, never mind research.

On the positive side, it’s free** at point of use, and generally does a good job.

.There have been signs for a while that the NHS has been starting to think about data.

  • Dr Carl Reynolds (@drcjar) at http://openhealthcare.org.uk/ has been leading the way on doing good things with health data, including running NHS hack days.  If you want to get involved the next one is in Liverpool on the 22-23 September
  • The UK set up the BioBank project, aimed to give a longitudinal study of people who aren’t necessarily ill.  If you think about it it’s fairly obvious that most people who go to their doctor are ill – BioBank aims to understand the factors in their lives that were the same, or different, to other people before and after they were ill.
  • Dr Ben Goldacre (@bengoldacre) has been leading a crusade to get clinical research data (even from trials that are abandoned or not published) into the public domain so that it can be used to compare outcomes.

But now the Government has gone much, much further and has created the Clinical Practice Research Datalink. In addition to having a funky website this aims to bring together data from the NHS so that this vast set of data can be used to improve health outcomes.

Of course there is a very, very big cloud hanging over this. How do you anonymise patient data so that it is still useful?  Simply removing names and addresses won’t deal with the issue, as Ross Anderson of Cambridge University identifies (the Guardian again – don’t say they aren’t fair and balanced!).

But I think, on balance, I disagree with Ross. I’ve come to the conclusion that we can’t rely on privacy, and that the exchange of a guarantee on privacy for free medical care is probably reasonable in itself. Especially as the guarantee isn’t really worth much these days.  When you add to this the potential benefits to research, then the answer is even more obvious. How many people would be happy to give up their privacy if they knew that one day they, or their kids, might be relying on the treatment that resulted?

*Actually there are three, NHS England and Wales, NHS Scotland, and NHS Northern Ireland, but let’s assume they are the same thing for this argument. NHS E&W is by far the largest.

**Nearly.

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