Your health data is precious - look after it

If you have a GP in England you really should read this article and consider whether or not you want your personal and sensitive health data to be shared with third parties by NHS Digital. Sharing and analysing ‘big’ health data is important to improve health outcomes but when it’s done in this highly secretive and opt out manner then (in my view) the ethical risks far outweigh potential benefits. If this data gets into the wrong hands it could go very badly wrong (think Cambridge Analytica with bells on). Data is immensely valuable to private interests, and none more so than health data. According to NHS Digital there is nothing to worry about. They have been good enough to write some stock answers for GPs to use to assure patients that this is a purely benign and non-controversial move.

It's worth noting that the Guardian article erroneously suggest the data is anonymous because identifiers are removed but it is possible to re-identify people. That means it’s pseudonymised which is an entirely different thing. Only when you cannot re-identify people is data anonymous. Aside from using a key to reidentify people GP records are so rich and personal that it might well be possible re-identify people regardless based on other data about their characteristics etc

The article also describes an opt out option until 23rd of June (albeit, NHS Digital's website suggests this can be done at any point) so there is time to act or to least make a fully informed decision. If I were in England I would definitely be opting out unless I was fully informed every time someone wanted to use my health data. Opt in should be default with such sensitive data.

Please make sure friends, family and colleagues in England are aware of what’s about to happen to their data and what they can do about it.