November 9, 2012

Is the UK really uniquely placed to datamine electronic health records?

The advantages of storing patient information in electronic health records (EHRs) rather than on paper are obvious: Data can easily be accessed from multiple locations and be transferred between doctors, hospitals, and software programs.

There is another, less direct advantage as well: EHRs can be datamined to glean new medical insights. For example, this way the adverse side effects of drugs in specific subpopulations can be detected in a much more sensitive way than would be possible otherwise.
The usefulness of datamining health records is clear. For example, the effects of thalidomide on foetuses were first demonstrated by analysing paper health records. Such analysis could be done much more efficiently with access to electronic records.
Here in the UK, many clinical researchers claim that the UK is uniquely placed to be at the forefront of this type of research because of the unique nature of the way health care system is organised. But is it really?

The National Health Service (NHS), the UK's publicly funded healthcare system, is enough of a source of national pride to have featured in the Olympic opening ceremony in London earlier this year.
The NHS is in the process of opening its EHRs to research via a system called the Clinical Practice Research Datalink (CPRD). This will enable datamining of EHRs, and the results will be shared with scientists once they have been anonymised to protect patients' privacy.
The question remains whether this is particularly revolutionary. Other European countries also have centralised healthcare systems that are often better managed than the NHS, and have made attempts to replace legacy health records with electronic systems. The success of this has been varied. For example in France, like in the UK, adaptation is slow. The Nordic countries are relatively far ahead in this matter. Germany, due to the decentralised nature of its healthcare system and because of privacy concerns, has not even bothered to try.
But as far as I can tell, there is surprisingly little effort to open the EHRs that are up and running to epidemiological research comparable to England's CPRD. Spending a few hours on looking for information on this, I could not find evidence of a system that is comparable in scope to CPRD anywhere else in Europe.
If you know of comparable efforts in Europe or beyond, I'd therefore be very interested to hear about them in the comment section.

1 comment:

  1. Great post. My coworkers and I were debating the benefits about Electronic Health Records the other day. I will have to send this to them. Thanks so much for sharing Art, this was a very interesting read.