Sunday, December 16, 2012

A letter to my MP about medical data standards

Dear Mark Field,

My wife and I have recently attended hospitals to have medical scans.  The pattern these days seems to be to hand people a CD containing the images.  All good, except the images are in a proprietary format which is not so good as it means we can't view the scan images.

This points to a wider issue.  The medical industry lacks open data standards.  They have heaps of things which pretend to be standards (described as 'de-facto' or similar), but few if any real ISO style standards.  It is counter-productive to impose requirements for specific software (as we have seen with various NHS software system disasters), but it would be a big positive to legislate standards for data.  As an example of how well data standards can work, look at your mobile phone:  in Europe phones had to follow the GSM standard and that now means I can pick any phone to use with any provider ... I just swap the *standard* SIM from one device to another, or use the same device with a different SIM.  Back to medical standards; I suggest that medical images be presented in a standard format (TIFF, PNG - something non-lossy like that) and that medical data (meta-data, i.e. data about the image) be included along-side using XML or similar, but whatever standard is chosen it should be *open* and easy for equipment manufacturers to work with and for patients (and doctors!) to view the data. (I recently met with a doctor and he was unable to view the images of my scans because the software he had would not work with the images I had been given).

The money recently wasted on NHS systems was wasted because the focus was on *systems* not on data format standards.  It's as if the NHS spent money on making the perfect phone rather than defining GSM. The NHS spectacularly (if unsurprisingly) failed to make the perfect fits-all-needs system, but they could have defined a first version of a standard interchangeable patient record, or even just how medial image data would be exchanged.  With standard(s) in place the software industry could then step in to implement competing systems (built on their own dime, much as phone companies make phones on their own dime) which the medical industry could use to manage and view patient data.

If there was a standard my wife and I could view the medical scans on the CDs we were given.  As it is, the best use for those CDs is as coffee mats or perhaps Frisbees.

I'm asking that you pursue making legislation which requires the NHS to exchange data in standard formats or to have the NHS (or a delegated standards body) devise and evolve such formats where standards don't exist or don't meet current needs.

I'm also asking that you resist any moves to let the NHS build software systems.  They are clearly rubbish at doing it.

Yours sincerely,
   Bruce Badger

1 comment:

Anonymous said...

At one point I had to deal with this too... I looked at the image files and figured out the manufacturer of the CT scan machine. Google knew a support phone number. I called in and found that the manufacturer couldn't provide software, *but* the images were in a "standard" of sorts format and that you could download a freeware viewer from the web. Indeed, it was true. And then I could look at the images. IIRC the format was DICOM.