In our last newsletter we said there’d be more news soon. While this isn’t quite what we meant, it is very important indeed.
In the House of Lords last week, it was confirmed that Blackburn with Darwen will be the first care.data pathfinder area. Questions asked in the Commons about exactly when this would be remain unanswered.
From launching in six CCGs, as announced last October, care.data is now down to limping out in just one – and with the summer holidays rapidly approaching, sending out letters that may get mixed up with the pizza leaflets while people are away doesn’t seem all that sensible…
medConfidential will be writing to the Information Commissioner with a substantive complaint covering all of the relevant details and providing documentary evidence which won’t allow NHS England to blame HSCIC (or the ICO itself) for delaying everything for another six months.
The solution was outlined in our last newsletter. This is a solution which the Department of Health could authorise and begin this week if it wished, and which HSCIC could make retroactive from last April (i.e. ensuring that those who have opted out by the time the problem is fixed will no longer have their hospital data from last year sold on to third parties) via the “full-year HES” datasets which replace the ‘interim’ HES releases.
Bottom line: if you have concerns, and you haven’t done so already, our advice on opting out remains unchanged until the Department of Health or Secretary of State announces details.
We have not yet seen the Secretary of State’s ‘Directions on Patient Objections’, which could repeat NHS England’s flawed decisions about care.data, or choose another path – as we discussed in our last newsletter – and which would also satisfy Jeremy Hunt’s promises from 2013 (timecode: 14:20).
HSCIC may only do as it is Directed by NHS England and the Secretary of State / Department of Health, which is one reason why the ICO complaint requires exactly the right footnotes; to highlight the specific decisions and (lack of) responsibilities that have led to this mess.
To stay informed of progress, please join our mailing list. And don’t forget to spread the word – this affects your friends and family too.
medConfidential is a tiny campaign, fighting a huge fight on behalf of every NHS patient. If you can help us, please do.
Every penny received will be spent on averting the most appalling breach of confidence in NHS history and ensuring that in future every flow of patient data into, across and – most importantly – out of the NHS is consensual, safe and transparent.