chaos.data

Over a year ago, Ben Goldacre wrote “Care.data is in chaos. It breaks my heart”.

Absent explicit instruction from the Secretary of State, it is now clear that NHS England is just going to keep on making the chaos worse. 16 months after it was “paused”, care.data is resurfacing in a way that gives some insight into the shambolic mess it is still in.

This Wednesday, after Blackburn with Darwen Healthwatch announced then withdrew (footnote 2) its announcement, Blackburn with Darwen CCG announced it is “ready to start” sending out patient communications “at the end of June”. But NHS England is nowhere near ready; vital preconditions for a restart – not least honouring the choices a million patients made last year – have yet to be met.

NHS England remains mute on Dame Fiona Caldicott’s 27 areas of concern and there’s ‘missing’ legislation: Directions defining how patient opt-outs must now work; Directions fixing the broken 2013 definition of the programme; Regulations to guarantee vital safeguards, including ‘one strike and you’re out’ sanctions for misuse of patient data, and closing the ‘McDonald’s loophole’ (p6) that legitimises a wide range of “commercial re-uses” of patient data. None of them in place.

It’s utter chaos. But to proceed without honouring a million patients’ existing opt-outs – not just to stop their information being extracted from their GP record, but stopping their hospital data from continuing to be sold for uses other than their direct care – would be a breach of trust on an unprecedented scale, breaking supposedly unconditional promises that Jeremy Hunt gave back as far as April 2013: “We will respect them” (timecode 13:30)

If their intention is to “regain public confidence”, the Secretary of State and NHS England are going about it in the strangest way. NHS England might claim to have been “listening” but, if it has, why is it wilfully ignoring a million patients’ concerns and express wishes?

The clock will start ticking again from the moment the first care.data letter is sent out – not the first data extraction, as some officials would have you believe. And at this point, having broken a million promises, what possible basis does NHS England think it has to ask patients to trust it with their most personal information?

What can you do?

medConfidential continues to push hard for everyone’s confidentiality and consent to be respected. Every use of your medical record must be consensual, safe and transparent. And be assured, we are taking this fight to the highest level – but we need your help.

The first thing you can do is tell your friends and family. If you are reading this, you are clearly paying attention – but many others simply won’t know anything about what’s going on. It’s been well over a year since care.data was “paused” and the vast majority of people probably think it was stopped for good. If nothing else, please forward a copy of this newsletter by e-mail to the people you know and care about.

Please keep posting links to medConfidential’s News feed: https://medconfidential.org/news/ on Facebook or Twitter if you use them, or forums and other social media. If you happen to know anyone in one of the four care.data “pathfinder” areas – that’s Blackburn with Darwen, Somerset, West Hampshire or Leeds – or if you know someone who does, please make sure to get in touch and tell them.

N.B. Given news in the medical press and papers this week about a more localised “care.data-like” scheme in Southend, please tell anyone you know in Southend as well. We’ll provide more details as we get them.

And finally, please take the time this evening or this weekend to write to your MP. The quickest and easiest way to do this is via https://www.writetothem.com/ – and it is particularly important to write if your MP was newly elected in May.

medConfidential has already written to all newly-elected MPs to tell them about the issue, but they need to hear about it from their constituents. And the message that needs to come across loud and clear to every MP right now is: “Opt-outs must be honoured. Trust is being actively damaged (again). Don’t let NHS England make any more mistakes.”

We cannot tell you exactly what to say – it’s actually far better if we don’t, and your letter will have far more impact if you write in your own words – but please write as clearly and concisely as you can about your concerns. If you have opted out, do make sure to ask your MP to ask the Secretary of State when he is going to honour his promise and ensure that your opt-outs are actioned and respected. Even if he or she does not agree with you, your MP should pass on a specific question to a Government Minister when asked.

What’s next?

We await answers from the Commissioning Board (i.e. NHS England) about its re-issued care.data Directions, to replace its broken Directions from 2013. We highlighted significant problems before its last board meeting and the Board’s Chair said he will write to us. He hasn’t yet.

We await sight of Directions from the Secretary of State about ‘Patient Objections’ – the legal definition of how the opt-outs must work, on which NHS England’s Directions depend. HSCIC’s Board is scheduled to consider these in July, but that is after Blackburn with Darwen CCG says it could start contacting patients.

We await publication of the CAG (Confidentiality Advisory Group) Regulations, themselves now delayed for almost a year. Will they contain all of the promised safeguards and, crucially, a clearer definition of the deeply controversial “promotion of health” purpose that perpetuates the sale of patient data to Pharma marketers and other commercial interests?

We await public answers to Dame Fiona Caldicott’s 27 areas of concern but, even more importantly, we are still waiting for the Office of the National Data Guardian to be put onto a proper statutory footing “at the earliest opportunity”, to reinstate the independent information governance oversight abolished by the Health and Social Care Act 2012. Dame Fiona’s advice has been ignored by NHS England before.

We await the re-establishment of the Health Select Committee, and (hopefully) the re-opening of its Inquiry into the ‘Handling of NHS patient data’. Questions have already been asked in the Lords; we sincerely hope the Commons will demand answers about the continuing chaos too.

And finally

We are very grateful for all the support we receive – not just money, but the information people provide and the actions you take. Our thanks to all those who got in touch after our last newsletter; we’ve been a bit busy(!) but we will be contacting you shortly, with some specific requests.

medConfidential is still unfunded. We have submitted grant applications, and hope to hear back on the first of them by the end of the month. But for now we are doing this because we have to.

Last year, amongst other things, we helped hundreds of thousands of people opt out, believing no Government or arm’s-length body would be so stupid or arrogant as to break the promises that had already been made. medConfidential’s promise may have been implicit – “We’ll make sure this works” – but we, unlike some, stick to our promises. So we fight on.

If you can afford to make a donation, please do:

Phil Booth and Sam Smith
medConfidential

12th June 2015