care.data’s big post-election question
Over 700,000 people are still waiting for a public announcement about what has happened to the opt-outs they made in 2014 – an announcement that was delayed “until after the election”.
Now the election is over, the Department of Health and its bodies have two choices. The first option is for them to write to every patient affected by their mistake, and say:
“We are very sorry. There was a mistake on our part, but we’re fixing it, and we will do what you asked: your medical records will not be used beyond your direct care. This process has now begun for hospital records, for maternity records, and for mental health records – including the data releases covering all of last year – and other parts of the NHS will meet the guarantee we made you as soon as possible. But, whatever happens, from today forwards you will be told everywhere your data goes, and why.”
They can make every single part of the above statement true, and (as a bonus) it would cost no more to do than what they’re planning on doing anyway. This would represent the NHS taking ownership of the problem, and promising to do much better in future – and being transparent about what happens to your data. You wouldn’t have to simply trust they got it right; you would be able to know what happened, and could make your own judgements.
The Department’s second option – the choice NHS England would like Jeremy Hunt to pick – is to make their invasion of your privacy your problem, and to transfer the complexity of knowing how the NHS works (this week…) from the Government on to you and every other patient.
They might send a different letter which talks only about your GP records as part of care.data, ignoring the information collected by every other care provider; a letter which offers a different opt-out from what you did last year, where you will have to call up or go to the internet for a second form [PDF] if you want to protect your hospital data; and, even if you already opted out, you will get a letter as if you hadn’t.
So the big question is, will Jeremy Hunt make it your problem that NHS England still wants to allow your medical records to be sold?
What happens next?
The Health and Social Care Information Centre will do whichever of those it is allowed to do. It can do either, but it doesn’t make the decision. That’s up to Mr Hunt, who will take advice from NHS England. So what’s it to be?
NHS England kept the opt-out problem secret for over a year – even while it was sending out the junk-mail leaflets last January / February, saying the choice existed. Then it hid the problem for another 10 months, before passing the buck to HSCIC last November without even telling them the size of the problem. (HSCIC told us they were working it out less than a fortnight later.)
Officials have now admitted the likely scale of the problem; we await news from Ministers on what they’ll do next.
The Directions approved “in principle” by NHS England’s Board last Thursday suggest communications could go out to patients as soon as this month, once HSCIC has published the updated ‘clinical code specification’ for the data that will be extracted from your GP record. So it appears NHS England is expecting to do a number two – making your medical privacy your problem, not theirs. Have they learnt nothing?
Live in Somerset, West Hampshire or Blackburn with Darwen? You’re up first…
The Schedule (p5) to the Directions considered by NHS England’s Board last Thursday excluded the three Leeds CCGs, previously announced to be participating as pathfinders. Presuming this wasn’t just a typing error, GPs and patients in Leeds can relax a bit. For now.
However, if you live in one of the other three pathfinder areas listed above, NHS England has decided you’ll be the first guinea-pigs for its ever-more-complicated zombie data grab.
No list of participating GP practices has been published as yet, but as the summer holidays are rapidly approaching please do let friends, family and colleagues know they should be on the alert, e.g. by forwarding them this newsletter, or encouraging them to subscribe – it’ll take less than a minute.
While medConfidential believes and has said it would be a big mistake for NHS England to start sending out patient communications over the summer, they do have form for ignoring sound advice…
We have a couple of questions which would benefit from some local knowledge. If you fancy helping us out, please e-mail email@example.com and we’ll let you know how you can help.
Unless you live in an affected area, there’s no substantive action for you in this newsletter; there will be next time.
Phil Booth and Sam Smith
1st June 2015
(Apologies to those who received the Bulletin by e-mail – we forgot to update the date in the footer, so it read 1st April, not 1st June as it should have.)