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Through recent events I've become acutely aware of how completely disorganised is the National Health Service's methods of keeping patient records. Every GP (general practitioner), hospital, consultant, dentist, physiotherapist, geriatric unit, and occupational therapist keeps their own records. Those records sit in computer systems or on bits of paper. Sometimes the different agencies talk to each other. More often they don't.
This leaves patients and their families to try to pull together all these disparate pieces of information into a coherent whole.
The NHS is currently going through an immense IT project to try to build a national patient record system. It sounds like this is well over budget, over time, and doesn't work. It's by far the biggest project of its kind. Perhaps it's too big to ever work?
Instead of a monolithic system, how about adopting a "small pieces, loosely joined" philosophy. And instead of the doctors controlling what goes into your record, let the patient decide who they trust with their data?
Each individual could have a data store. It could be on an ID card, on a tag that you keep around your neck, on a USB stick, on a secure website even.
Whenever you need to see your doctor, consultant, therapist, insurance company etc you give them access to the records you want them to be able to see.
When the consultation or hospital stay is over the notes kept will be sent to your data store.
There are numerous political and technical barriers to get over to make this succeed:
- The data will need to be stored in a consistent, standardised format?
- A range of transport mechanisms will need to be agreed and standardised
- Data security concerns will need to be addressed through simple, but effective encryption and authentication mechanisms
- Software and hardware providers will need to comply with an accreditation or registration process which provides a stamp of approval
None of this is easy. But, once the ground rules are in place and placed in the public domain, it allows a much more distributed development process than is currently happening. We might even get a system that works.
4 comments
I guess you’ve heard of Google Health. Google now wants to store all your medical records to make them easily available.
Does that sound bad? It actually is pretty bad.
I remember this one Seinfeld episode from Season 5 in which Jerry says that the medicine cabinet is everyone’s Achilles heel - the exact words he used was “Oh, so Mr. Perfect here has a hair problem". Once you take a look inside someone personal health records (as exemplified by the medicine cabinet here), you know what their weaknesses are.
And that can’t be a very good thing, can it?
Mark -
I like the approach you propose - although clearly there would be issues to over come (and probably the political ones harder than the technical).
The question this raises for me is how would it work with health and life insurance companies? I believe that it is reasonable and correct (within whatever constraints exist in law) for these to have full access to your medical record - but if the record is entirely within the patients control, how would this be achieved?
Regards,
Ian.
@Brad: Google Health does concern me. Not as a concept, but because, for Google, it’s a means to an end - increasing profits from advertising. I would much rather deal with a company that was only interested in looking after my health records.
@Ian: At the moment, there’s no such thing as full access to my medical record, as it’s split across so many different places. I’m sure there’s a way we could make it work - eg. by sending an encrypted snapshot of the health record. There’s a worry that people might want to delete parts of their record. But, in the event of a query, it should be possible to correlate across multiple data sources to see if anything’s missing.
@Mark
I’ve been very wary of Google as a company. We’ve given too much power to them - i mean, they can deduce pretty much everything there is to know about me based on my search history.
Now would I want them to know my medical history too?
Hell no!
