IIt feels so bad to start an article with the words “you need to hear about this” when it’s not about things Gwyneth Paltrow wants you to put in your vagina, or on 20 of the world’s top kitchen islands. Still, could you… could you consider listening to this?
Eight years ago, the government had such a good plan that it couldn’t tell you. That wanted to scrape all in the full English GP records and put them in a central database, where they would be anonymized, well, more or less! – is then made available to third parties for research purposes, including private companies. And he called it Care.data, which is precisely the kind of name that you would give to (a) a plan to get everyone’s health data and allow commercial companies like Google to use it without your explicit consent, or (b) a desktop folder with pictures of everyone at their workplace using the second floor bathrooms. But that’s okay, because you don’t show your head. You set the camera so that it is upside down.
Naturally, this is worth a fortune to private corporations. Now we come back to the data, not to the theoretical images of everyone at their workplace in the bathroom. Which is a shame, in a way, because the data is arguably much more personal, covering everything from sexual and mental health, abuse, criminal history, ethnicity, gender, drug and alcohol history … you get it. Anyway, Care.data failed, because a smorgasbord of privacy activists, concerned doctors and MPs like David Davis campaigned, meaning there was a public debate and enough people found out in time to opt out. After its collapse, the Care.data plan was described by a statistics professor as “disastrously incompetent, both ethically and technically.” Which sounds like the kind of criticism Mary Berry would give about Bake Off to a roll made entirely of human ears, but which arguably has even broader implications.
Well, the government learned its lesson. That is, eight years later, literally right now, the same thing is being done, only in less time, without a public awareness campaign, with a more complicated strategy. opt out, and in the midst of a global pandemic. Do you, on some level, admire the work?
SPOILER: no. With hand on heart, it is difficult to arouse more than deep suspicion, born of bitter experience, that NHS Digital has barely informed GPs, waiting until the last minute to order them to send the records. of each patient in your care, where they will become a permanent and irreversible part of the new database. Neither the British Medical Association nor the Royal College of GPs have endorsed this process. Patients have until June 23 to opt out, and most don’t even know it.
Once again, a motley gang of privacy activists, concerned doctors and MP David Davis are mounting a rearguard action, with legal threats. sent to the government today.
Why are the experts so concerned, then, when Matt Hancock and his friends just want to heal the world? Before even answering that, keep in mind that there is ALREADY a secure way for researchers to access genuinely anonymized data on Covid: the Reliable research environment. The data that NHS Digital will store is pseudonymised and it says it will only be shared with commercial third parties for “research and planning purposes.” But it would be relatively easy to re-identify that data, especially for those with cross-reference access to other databases, not to mention the risk of third-party breaches it opens up. According to the lot not promoted page on the NHS website, the NHS will be able to to unlock the pseudonymization codes “in certain circumstances and when there is a valid legal reason”. (You can assume they’ve called for new data capture. Honestly what could happen? Data, but instead they’ve opted for GPDPR.)
As for why they are effectively rebooting a failed plan now, with GPs already drowning in a backlog of care delayed by the pandemic, it feels like the perfect time for the famously competent health department to do a little thing that in no road time needs coverage.
In fact, this approach is now so endemic in the Boris Johnson government that it should be regarded as the official playbook: hiding vital information from the public, acquisitions without transparency, secret contracts, a pathological aversion to any kind of scrutiny, and then saying anyone who finds out that it is in their best interest and who absolutely refuses to apologize for it. After the last 14 months, it would take a very large database to store all the things the government absolutely refuses to apologize for. If you think you want to opt out, if only to save time and transparency, this is where to go. If there’s nothing to worry our pretty little heads about, maybe the government would at least do us the courtesy of openly explaining why.
George is Digismak’s reported cum editor with 13 years of experience in Journalism