Today I gave a talk at the Open Data Institute on a catastrophic failure of anonymity in medical research. Here’s the audio and video, and here are the slides.
Three weeks ago we made a formal complaint to the ICO about the Department of Health supplying a large amount of data to PA Consulting, who uploaded it to the Google cloud in defiance of NHS regulations on sending data abroad. This follows several other scandals over NHS chiefs claiming that hospital episode statistics data are anonymous and selling it to third parties, when it is nothing of the kind.
Yesterday the Department of Health disclosed its Register of Approved Data Releases which shows that many organisations in both the public and private sectors have been supplied with HES data over the past year. It’s amazing how many of them are marked “non sensitive”: even number 408, where Imperial College got data with the with HESID (which includes postcode or NHS number), date of birth, home address, and GP practice. How officials can maintain that such data does not identify individuals is beyond me.