Saturday, 17 May 2014

Care.data Didn't Care Enough


It’s clear that both doctors and patients are becoming more aware of what good communication means, and how important it is.  Add this to a desire to communicate in more rapid, perhaps informal way, and you have fertile ground to bring in new IT systems to support exactly that.

It's bewildering to many GPs in England, then, that the new healthcare data system got it so badly wrong.  And it fouled up on the most basic medical principle; informed consent.

New technology continues to enable communication but brings additional risks. Take the case of NHSEngland’s ‘care.data’, a national database linking all patient datasets. Well-publicised data entry errors and poor communication to doctors, clinicians and the public are raising concerns in how information is to be used. In a recent poll 41% of GPs in England were intending to opt-out of the next data-sweep, while a recent NHSEngland information leaflet was itself condemned for being unclear.

So the rebrand of care.data is now well underway.  It's yet to be seen how many of the straight forward issues will be altered.  No doubt the marketing agency has been fired; there will be a new leaflet with opt-in as default, and a clearer information design.

However, will there be a change to the fundamental problem that plagued the first attempted launch? That of gaining informed consent?

According to a recent mori poll, when the benefits of care.date are clearly put, and the personal risk explained many change their position and become supporters.  It's hard to stand against a system that will save lives, and may save you're own one to boot. The main concern that the data will be used commercially is factually wrong, and was never the case.  But that case was never properly explained.

The medical profession have informed consent at it's core.  Marketing and Information Systems Design does not. It's time the latter started to understand the former, their customers.