August 28th, 2012 at 18:53 UTC by Ross Anderson
The Guardian has published an op-ed I wrote on the risks of anonymised medical records along with a news article on CPRD, a system that will make our medical records available for researchers from next month, albeit with the names and addresses removed.
The government has been pushing for this since last year, having appointed medical datamining enthusiast Tim Kelsey as its “transparency tsar”. There have been two consultations on how records should be anonymised, and how effective it could be; you can read our responses here and here (see also FIPR blog here). Anonymisation has long been known to be harder than it looks (and the Royal Society recently issued a authoritative report which said so). But getting civil servants to listen to X when the Prime Minister has declared for Not-X is harder still!
Despite promises that the anonymity mechanisms would be open for public scrutiny, CPRD refused a Freedom of Information request to disclose them, apparently fearing that disclosure would damage security. Yet research papers written using CPRD data will surely have to disclose how the data were manipulated. So the security mechanisms will become known, and yet researchers will become careless. I fear we can expect a lot more incidents like this one.