In case you missed any of the recent news items, the NHS in England is planning to make available for sale our patient medical data, This is called “care.data.”
We all received a flyer over a year ago and then everything went quiet – not a lot information and crucially no information about opting out for you or your children.
Opinions vary as to how anonymous the data will be but worse case it may include a code made up of your name, postcode and date of birth – hardly anonymous. This is a so-called “HES ID ” number.
I am grateful to Dr Bhatia of Hampshire and the Caldicott Guardian who have published on the web all the information that you need to be able to understand about care.data (this is the name the NHS has given to our data).
I am particularly concerned that this data once loaded appears to lose all of its privacy protection under UK law and can be put on cloud servers anywhere in the world and not even encrypted. This is because of the claimed anonymous nature of care.data and so it gets categorised as “non-sensitive”.
To help anyone wanting to opt out Dr Bhatia has also published “How to opt-out of care.data”.