It has been a while since we last sent a newsletter. Our apologies for that, but we have been kept busy!

We are entering a period where a lot of things are happening – and are likely to happen – in quick succession, so we wanted to provide a perspective and some context that we hope will help explain at least some of what is going on.

For patients whose practices use TPP SystmOne

You may have seen the note on our website last week about TPP SystmOne. TPP has now updated its system with the capacity to allow your GP tell you how your GP-held data has been accessed. However, busy GPs won’t yet know how to turn that function on, as the documentation has not yet appeared (and we’ve not been told either).

If your practice uses TPP SystmOne, also branded SystmOnline, and you are able to log into your GP practice online (i.e. if you have a username/password for online access) then you may be able to see this option – to review the organisations which have accessed your GP data – right now. If not, check back in a week or two. It is coming.

This ability to see who has accessed your GP data matters, as the the hard part of informed consent is actually being informed about how your medical records are used. As the NHS evolves over time, and while you have a range of consent choices, you need to have accurate information to be able to make those choices for yourself and your family; in your situation, according to your concerns.

Problems tend to arise when people other than those directly affected take decisions that do not – indeed, cannot – account for many millions of people’s individual circumstances.

Google Artificial Intelligence (AI) subsidiary DeepMind

When in a hole, it seems some AIs will keep digging.

medConfidential’s complaint against Google DeepMind’s use of 1.2 million patients’ hospital data continues to be investigated. The National Data Guardian appears to have come to a view some time ago – which suggests the question currently under consideration is how badly Google broke the rules.

A long analysis from the University of Cambridge was published last week, which goes through the entire sorry story in a great deal of detail.

We do not know when the Information Commissioner and National Data Guardian will publish their findings, but fully expect Google DeepMind to leak some parts of those findings to sycophantic outlets the day before…

We shall respond, as we always do.

What’s next?  An NHS reorganisation that really matters

Has your area announced the reorganisation of your NHS yet? For several big cities of the North, and some other parts of the country, the picture is getting clearer. The ‘STP shuffle’ will put your local council in partial control of where your medical records get copied – including whether they end up being dumped into a “data lake”.

In hidden meetings, proposals for a “national data lake” continue to be discussed. While NHS England denies it is their current plan, they continue to write regular drafts of an updated document, which they’re sharing with no-one beyond those people who thought a ‘National Data Lake’ was a good idea in the first place…

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In our next Bulletin,  we hope to have something for you to do to help your community, and may also give an update on the continuing failures around data at Public Health England.

As ever, we are grateful for your donations. Especially as, right now, we’re being legally threatened (we’re in ‘letters before action’ stage of an attempt to sue us for defamation) for expressing our concerns about a data breach reported as affecting 26 million patients – that’s a lot of new badges.

(We’re aware that, as badges, our button badges in two new designs are ridiculously overpriced. The price point is deliberately chosen so that a donation of £20 to us gets you one, automatically. Or set up a regular subscription for any amount – and we’ll post it to you.)

Thank you.

Phil Booth & Sam Smith
24th March 2017

MedConfidential newsletter – Do you want your GP records shared, even if you’ve opted out?

Care.data may be gone, but Jeremy Hunt is asking whether you want to keep your opt out of your medical records leaving your GP’s practice. Will you tell him what you think?

There’s a government consultation going on on into the future sharing of your medical records. It doesn’t say it clearly, but what they are asking is do you want your GP to keep your medical history private?

If you do, please respond to the consultation, and tell your friends:

You can respond to the consultation online. You don’t need to answer every question, and can only answer question 15 if you wish.

You might want to mention some of these points in your own words:

• Why is what you tell your GP private for you?
• Why must doctors and the NHS keep the promises they make to you?
• Is this promise clear: “information about me can only be used by the people directly providing my care”?
  • Do you want that promise to be given and kept?

Previously, those questions have been ignored in private. Now they’re public, you get your say. The people who want to use your health data will reply, will you?

For our longer analysis of the Caldicott Review that led into the consultation, it’s online in 4 parts.

(You may have noticed the new format and process for our newsletter – it hopefully works out far cheaper. It’s still the same information you subscribed to about keeping your NHS records confidential. We won’t pass on your email address. If you no longer wish to hear from us, just email unsubscribe@medconfidential.org or click the link below)

A New Government…

We wait to see what will happen with Theresa May as Prime Minister, and her appointment of Ministers. The Home Secretary focuses on national security – the Prime Minister will focus on what is in the wider national interest.

The Conservative Manifesto said: “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”.

Will this be done, and will this be seen to be done?

…but the spirit of care.data continues?

In the overview of her recent report, Dame Fiona Caldicott quoted the (then) Health Secretary saying: “Exciting though this all is, we will throw away these opportunities if the public do not believe they can trust us to look after their personal medical data securely. The NHS has not yet won the public’s trust in an area that is vital for the future of patient care’”.

As such, we’re disappointed in the “keep going” approach of the Department of Health. These are issues covered in the current public consultation, so aren’t on the immediate in tray of new Ministers. We’ll cover details next time.

Care.data was the spark that created widespread interest, but the fuel for the fire was the surprising data uses much more widely. Adding a care.data nameplate just showed that the data governance emperor was naked – with the health data of everyone on display.

Snuck out in a long announcement, the care.data name has gone, but the plans continue as they were originally designed back in 2013.

A simple name swap for the same goal might have worked with the last Prime Minister; we’re not sure it will work for this one.

Patients should not be surprised by what happened with data about them. Will the surprises continue?

What’s next?

If, as Recommendation 11 says, that “There should be a new consent/ opt-out model to allow people to opt out of their personal confidential data being used for purposes beyond their direct care. This would apply unless there is a mandatory legal requirement or an overriding public interest.” – then that must be true.

The new focus on the use of doctors and trusted individuals to explain the arrangements to patients are important. As care.data showed, what they say has to be true to avoid great harm to those relationship. The researcher community was burnt supporting care.data, hopefully they will not do the same thing twice.

Government promises being explained by your doctor will mean those who make the promises will have no ability to ensure they are kept.

We’ll cover the details of the consultation in the next newsletter, and how you can respond to say why promises made to you should be kept.

Government may want doctors to make promises to patients, but it will remain politicians and accountants breaking them.

We’ll be here.

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.