Hopefully, more people will be aware of Cambridge analytica…sorry the British Government’s attempts to mine our medical data with little notice thanks to Marina Hyde’s recent article.
Eight years ago the government had a plan so good it couldn’t tell you about it. It wanted to scrape everyone in England’s entire GP records and put them on one central database, where they would be anonymised – well, sort of! – then made available for research purposes to third parties, including private corporations.Excerpt from MH article
Anyway, Care.data failed, because a ragtag band of privacy campaigners, worried doctors and MPs like David Davis campaigned their arses off, meaning that there was public debate and enough people learned about it in time to opt out. Post its collapse, the Care.data plan was described by one statistics professor as “disastrously incompetent – both ethically and technically”…
And hey, the government learned its lesson. Which is to say that eight years on – literally right now – it’s doing the same thing, only in less time, without a public awareness campaign, with a trickier opt-out, and in the middle of a global pandemic.
So yeah, that’s happening. And you’ve only got until June the 23rd to opt out OF HAVING YOUR MEDICAL DETAILS SOLD TO PRIVATE COMPANIES!
This website – medconfidential.org goes through the details if what you need to do to opt out as an adult, to opt out if you’ve kids under 13 (which appear to be seen as fair game to this twisted shapeshifters) and the separate process for opting out digitally.
It’s a mess.
Here’s the relevant bits – am very grateful to whoever put this together to help protect us all!
1) Protect your GP data: fill in and give this ‘Type 1’ form to your GP practice[PDF] [or MS Word] – this form allows you to include details for your children and dependants as well. This is the most urgent step; the deadline to get your form to your GP practice is 23 June 2021, according to NHS Digital.
2) If you want to stop your non-GP data, such as hospital or clinic treatments, being used/sold for purposes other than your direct care (e.g. for “research and planning“) you must use this process:
- If it’s just for yourself, use NHS Digital’s online National Data Opt-out process – this process only works for individuals aged 13 and over.
- If you have children under 13, you need to fill in this form [PDF] and e-mail or post it back to NHS Digital – this form works for both you and your children.
- If you have an adult dependant for whom you have legal responsibility, you must use this form [PDF] and send it back to NHS Digital on their behalf.