Patient Records – The Debate is Just Starting

Earlier this week I attended a British Computer Society event “Public health – private data?” hosted jointly by the BCS Health Informatics Forum and the BCS Security Forum. This is not a new issue. Privacy advocates have long been banging the drum about this issue. The media has covered it extensively. And most British taxpayers are aware that the Government is investing billions of pounds in new infrastructure to enable their medical records to be more readily accessible. But I came away with the impression that we are only just commencing the much-needed debate on the ethics, requirements and solutions associated with safeguarding the privacy of patient records.

The first thing that struck me was that two BCS groups of professionals had decided to join forces to discuss these issues. (A third one, the Ethics forum, is also connected.) This is unprecedented in my experience. The second thing I noticed was the high degree of consensus amongst those present on many of the key issues. That’s also unusual. But the most striking impression of all was the sheer difficulty of the problem space created by the change from storing unique copies of paper records in local cubby-holes to downloading electronic images from joined-up broadband networks. The problems generated are serious and hard to resolve. Given enough cash, we can solve the technical ones, though they do require a few well-overdue developments in identity managements. The real issue is developing and implementing an acceptable set of rules governing just who can see what, as well as under what circumstances they can be overridden.

It’s the type of problem that some academics might classify as a “wicked problem”. Full of incomplete, contradictory and changing requirements. Such problems, like terrorism, are often found in areas associated with public policy. They don’t have clear-cut answers. What’s needed is an effective public debate. That’s not yet happened. But when I see healthcare, security and ethics professionals joining forces to discuss these issues, I feel a little bit more confident that we’re making some progress towards that goal.