Yesterday I gave a talk on confidentiality at the EMIS annual conference. I gained yet more insights into Britain’s disaster-prone health computerisation project. Why, for example, will this cost eleven figures, when EMIS writes the software used by 60% of England’s GPs to manage their practices with an annual development budget of only 25m?
On the consent front, it turns out that patients who exercise even the mildest form of opt-out from the national database (having their addresses stop-noted, which is the equivalent of going ex-directory — designed for celebs and people in witness protection) will not be able to use many of the swish new features we’re promised, such as automatic repeat prescriptions. There are concerns that providing a degraded health service to people who tick the privacy box might undermine the validity of consent to information sharing.
On the confidentiality front, people are starting to wrestle with the implications of allowing patients online access ot their records. Vulnerable patients — for example, under-age girls who have had pregancy terminations without telling their parents — could be at risk if they can access sensitive data online. They may be coerced into accessing it, or their passwords may become known to friends and family. So there’s talk of a two-tier online record — in effect introducing multilevel security into record access. Patients would be asked whether they wanted some, all, or none of their records to be available to them online. I don’t think the Department of Health understands the difficulties of multilevel security. I can’t help wondering whether online patient access is needed at all. Very few patients ever exercise their right to view and get a copy of their records; making all records available online seems more and more like a political gimmick to get people to accept the agenda of central data collection.
We don’t seem to have good ways of deciding what services should be kept offline. There’s been much debate about elections, and here’s an interesting case from healthcare. What else will come up, and are there any general principles we’re missing?