Now that everyone’s distracted with the supreme court case on Brexit, you can expect the government to sneak out something it’s ashamed of. Health secretary Jeremy Hunt has decided to ignore the wishes of over a million people who opted out of having their hospital records given to third parties such as drug companies, and the ICO has decided to pretend that the anonymisation mechanisms he says he’ll use instead are sufficient. One gently smoking gun is the fifth bullet in a new webpage here, where the Department of Health claims that when it says the data are anonymous, your wishes will be ignored. The news has been broken in an article in the Health Services Journal (it’s behind a paywall, as a splendid example of transparency) with the Wellcome Trust praising the ICO’s decision not to take action against the Department. We are assured that “the data is seen as crucial for vital research projects”. The exchange of letters with privacy campaigners that led up to this decision can be found here, here, here, here, here, here, and here.
An early portent of this u-turn was reported here in 2014 when officials reckoned that the only way they could still do administrative tasks such as calculating doctors’ bonuses was to just pretend that the data are anonymous even though they know it isn’t really. Then, after the care.data scandal showed that a billion records had been sold to over a thousand purchasers, we reported here how HES data had also been sold and how the minister seemed to have misled parliament about this.
I will be talking about ethics of all this on Thursday. Even if ministers claim that stolen medical records are OK to use, researchers must not act as if this is true; if patients end up trusting doctors as little as we trust politicians, then medical research will be in serious trouble. There is a video of a previous version of this talk here.
Meanwhile, if you’re annoyed that Jeremy Hunt proposes to ignore not just your privacy rights but your express wishes, you can send him a notice under Section 10 of the Data Protection Act forbidding him from disclosing your data. The Department has complied with such notices in the past, albeit with bad grace as they have no automated way to do it. If thousands of people serve such notices, they may finally have to stand up to the drug company lobbyists and write the missing software. For more, see here.