Your medical records are now officially on sale. American drug companies now learn that MedRed BT Health Cloud will provide public access to 50 million de-identified patient records from UK.
David Cameron announced in 2011 that every NHS patient would be a research patient, with their records opened up to private healthcare firms. He promised that our records would be anonymised and we’d have a right to opt out. I pointed out that anonymisation doesn’t work very well (as did the Royal Society) but the Information Commissioner predictably went along with the charade (and lobbyists are busy fixing up the new data protection regulation in Brussels to leave huge loopholes for health service management and research). The government duly started to compel the upload of GP data, to join the hospital data it already has. During the launch of a medical confidentiality campaign the health secretary promised to respect existing opt-outs but has now reneged on his promise.
The data being put online by BT appear to be the data it already manages from the Secondary Uses Service, which is mostly populated by records of finished consultant episodes from hospitals. These are pseudonymised by removing names and addresses but still have patient postcodes and dates of birth; patient views on this were ignored. I wonder if US purchasers will get these data items? I also wonder whether patients will be able to opt out of SUS? Campaigners have sent freedom of information requests to hundreds of hospitals to find out; so we should know soon enough.