If you have opted out, recently or before, your choices are now being honoured.

Thanks to all those who helped make this happen – especially you, our supporters, donors and friends.

The institutions involved did the right thing in the end, even if they tried all the other things first.

What just happened? Your opt out honoured

On Wednesday, the HSCIC announced that they had received permission from the Secretary of State to finally honour his promise to you. You can opt out of data leaving the HSCIC for purposes beyond your direct care, and that is what happens. When he created the opt out that you took up, NHS England, who was then responsible for it, didn’t think it would matter.

The tickbox that you and 1.2 million other people filled in is now being honoured. The announcement says it must be done by this time next week; in practice, we are happy that this is effective with immediate effect.

Until the public consultation on the Caldicott Review, there are a small number of narrow temporary exceptions (3), and some temporary gray areas (5). But in the main, it is now done. If any of those concerns are particularly concerning to you, please let us know. We’ll be writing to HSCIC with some clarification questions next week.

The next hospital dataset to be released will be the cleaned up “full year” data, which replaces past each month parts for April 2015 to March 2016. This is the critical release which really matters. Consent will be respected for this release, and data about those who have opted out will not be included.

The HSCIC has also undertaken with the Information Commissioner to reissue the 2014 – 2015 data to those who already received it. By contract, they are required to replace old data with new.  That undertaking is the direct result of a medConfidential complaint to the ICO.

GPs have been able to honour their part since you gave them the form.

In effect, for current and future projects, as much as it could have been, it is as if your opt out, for data leaving HSCIC for purposes beyond your direct care, was honoured in April 2014.

What’s next?

The announcements this week are not the end of this process – there is a great deal left to do.

The Caldicott Review of Consent is going to propose a comprehensive and permanent solution. That solution should satisfy concerned patients into the long term, resolve the grey areas and simplifies the whole thing. It will be the subject of a public consultation, and then legislation.

But as of Wednesday, the current state is now consensual, increasingly safe, and somewhat transparent. Reducing the number of copies of data that are made will reduce the number that can be lost or stolen. More transparency will mean that you will know that your wishes have been honoured – you wont have to trust they have.

What else?

If you’ve previously had a discussion with your MP on this topic, you may wish to get back in touch with them and thank them for their help, now that the Department of Health has done the right thing, and your wishes are being respected.

MPs often hear about problems, and less often hear about what happened as a result of their help, especially in a long term project like this has been. (You should probably make clear that this is a thank you note – it might confuse their busy offices if it’s unclear…) Also, there was an election in the interim, and some MPs will have changed.

For us, it’s not getting any quieter. There are other organisations that don’t wish to act as if their world has changed. Most seriously, there are a few other projects that see the style-first approach of care.data as a handbook, not a cautionary tale…

It never ends. But this week, a lot got better as a result of our work and your help. Thank you for your support until now, and hopefully into the future.

PS – our especially deep gratitude to all those who donations also helped. We couldn’t have done this without you.

It’s 2 years to the day since Care.Data was suspended amongst public outrage. The failed programme is showing no signs of restarting, as NHS England and the Department of Health continue to sift through old pampers, and keep finding yet more problems.

The Caldicott Review of Consent, which began after NHS England lied to the Care.Data Advisory Group, should report soon, if those who want to water it down to avoid having to make uncomfortable decisions. Why might they do that? Well…

Another Jeremy Hunt promise is broken – Your Hospital Data is still being sold

Before their January deadline, HSCIC finished the testing needed to implement the hospital data consent promise that Jeremy Hunt made to every patient – which 1 million patients who opted out took him up on. The final step was for Jeremy Hunt to give the go ahead to keep his promise. He didn’t.

Let us be clear: Jeremy Hunt made the patient promise 2 years ago, and it appears in the 2015 conservative manifesto (pg 38) “We will give you full access to your own electronic health records, while retaining your right to opt-out of your records being shared electronically.” Only he can break his promise, and he has chosen to do so.

So when will the opt outs be implemented? We look forward to hearing any answer the ICO receive shortly on exactly that question, as they respond to our complaint. The Department of Health are refusing to answer questions – which is understandable as they don’t have any answers.

Your GP will honour your request for data not to leave your GP practice, both because of medical ethics and because of their direct connection to you. Who is Jeremy Hunt connected to?

The interim-type-2 opt out can be implemented tomorrow if Jeremy Hunt tells HSCIC to do it. Why hasn’t he?

You may wish to write to your MP, and ask the question, “when will the Secretary of State for Health implement patients’ choices to prevent data about them leaving the HSCIC for purposes beyond direct care?” – please also say why this matters to you. (and sorry the question is a bit of a mouthful)

This can be fixed. The Health Secretary just has to take the single action necessary to fix it, permanently.

A perfect overarching consent flag is something we support; but at best, it is a year away from being something a patient can ask their GP to do. No scenario, other than immediate implementation of the interim-type-2s, addresses the gap between now and then. A long-term maybe-mythical “perfect” solution is currently the weapon of choice of those who want to prevent any patient choice over data usage at all: that change being the consent choice (aka “interim-type-2”) which 1 million patients have requested be actioned, and that they are all waiting patiently for. When the first step down the path to consent has been taken for national datasets, there can be confidence that subsequent steps will be taken. If not, and the Department of Health breaks Jeremy Hunt’s promise this time, why should anyone believe them next time?

What’s next: Care.Data Everywhere?

On Friday, we’re expecting that Cabinet Office to launch their data copying consultation, which probably won’t have the subheading “care.data everywhere”, but unless they’ve fixed their compulsion to copy, it probably should have. It’s not all terrible news; the worst projects (probably) didn’t get this far – what the consultation will show is the stuff that they don’t think is terrible (that’s probably not reassuring).

Every project involved has had to explain how “it’s not like care.data because…”, but the Cabinet Office has seemingly learnt only the lessons convenient for them to learn. It’s hard to all learn the right lesson when institutional incentives encourage people to learn easier ones.

The lack of critical thought across the programme appears in Parliament’s report on the “Big Data Dilemma”, which says the NHS could save £66bn from more data copying. Saving about two thirds of the NHS budget (equivalent to getting rid of all staff from the NHS) seems… unlikely.

We’ll see what the Cabinet Office consultation says over the weekend, and any health implications will appear in the next newsletter. The Caldicott Review is also due to be consulted on, if it ever gets published.

What’s Next: Saatchi Bill returns to the Lords

With the most problematic bits of the bill removed by MPs, the Saatchi Bill on “medical innovation” is now a mechanism to create new databases, and do so only with the approval of Parliament.  How is this different to care.data, which Tim Kelsey repeatedly said was “the will of Parliament”?

That’s a very good question. The main difference is whether Parliament says yes, or whether it chooses not to say anything. Currently, silence means support, which was the approach that failed catastrophically with care.data.

We’ll be looking to have conversations with their Lordships about an amendment to require Parliament to approve any plans, rather than simply not objecting. Especially as this Government is looking to remove the ability for the Lords to object to anything…

More soon, and we especially thank all those who have made donations.

It’s been a busy few weeks, as the Government came back from Conference season, and kicked their various schemes into high gear. In 2016, we’ll see data sharing across the NHS and Government taking up time: care.data may become a ministerial playbook.

Your support is greatly appreciated; and thanks to you and your loved ones at this time of year. But here’s where we are at the moment, if you wish to delay Christmas cheer just a little longer:

Care.Data.

Care.Data’s still suspended while Dame Fiona Caldicott tries to unwrap Tim Kelsey’s leaving present. The programme will enter 2016 as it left 2014: still digging in deeper. A new leadership for care.data was an opportunity to change that approach.

We’ve heard secondhand that the a new Senior Responsible Owner, obliged to hold this poisoned chalice, has been handpicked from the few loyal bag carriers left in the care.data bunker. Which means he’ll have repeatedly made valiant attempts at defending the inept and the ill considered. Indeed, the job description practically required blindly ignoring the fact that the ship was sinking until bailed out by his boss. With the Admiral’s hat his to don, it’s interesting to see if it will be full steam ahead into the iceberg of public rejection, yet again.

Dame Fiona Caldicott’s review of consent reports at the end of January, with Ministerial decisions in the months after that. Past NHS management has been good at persuading ministers to put their reputation behind the publicly indefensible until it becomes evident, even to the Department of Health, that perhaps that was unwise. At the last Care.Data Advisory Committee meeting, it was grudgingly admitted that the September roll out was halted by Jeremy Hunt himself…

Given Cabinet level discussions about data sharing, and the scope of opt-outs and consent, 2016 should be a busy year for data in the NHS and beyond. It seems some see care.data as a model to be copied. As always, the first question is whether the Government or NHS England wishes to constructively engage, or cower in a corner and ignore those who will point out necessary implementation changes. That choice is entirely up to them.

Your Right To Know

The CoverUp Commission has found that the public quite like the ability to request copies of Government documents in acts of citizen driven focussed transparency. Thank you for helping with that…

MedConfidential submitted a brief note of our own experiences of FOI, and also a saveFOI.uk submission of 260 different successful FOI requests (or outcomes from multiple requests), many submitted by you and others. SaveFOI.uk submission asked a simple question: Which of these questions does Lord Burns think shouldn’t have been answered?

Power likes secrecy, and “Burns it” would have been a common refrain in Tim Kelsey’s archipelago of NHS England. Freedom of Information is how the details of care.data were forced to be published. The deep veil of official secrecy continues to hide the bulk of Tim Kelsey’s legacy, which hopefully will start to burn up over time.

Not everyone gets to be an astronaut.

Everyone in the NHS wants to help improve the health of the nation, but that’s not the same thing as giving Direct Care. In the same way, that lots of people helped put a man on the moon, without being an astronaut. Every child eventually learns that not everyone gets to be an astronaut; and sometimes it’s a hard transition.

Tim Kelsey, who wanted all to sell medical records before his term was out, leaves NHS England today to take up a new post in Australia, but assured us he “will be back”.

Transitioning to consensual, safe and transparent data handling practices is as important for a hospital as good cleaning or sterile instruments – and the same thing happens when you disregard it too much. “Sufficient” cleaning is too much of a burden until it’s self-evident that it was too little, and harm occurs. Hopefully, in 2016, NHS England will learn about data hygiene and air quality. The astronaut programme had the literal version of the same problem. Will there be a systematic response to a politically driven digital-MRSA infecting the NHS and beyond? If the problem is left to go away of its own accord, it always comes back.

Consensual, Safe and Transparent Christmas sharing

It’s been a busy few months, but we’re still here, and would like to continue to be. If you wish to support our work, a donation is always greatly appreciated.

With best wishes to and your loved ones for Christmas and for the new year. May 2016 bring consensual, safe and transparent data flows throughout the NHS and beyond.

See you next year – we really couldn’t do this without you. Best wishes to one and all.

Sam and Phil