medConfidential Bulletin, 30th June 2017

So, we have a new Government (after a fashion). And, whatever else, there’s some continuity at the Department of Health…

Given this continuity, the completely unambiguous Conservative Manifesto commitment, and cross-party support for the National Data Guardian, it was a bit disappointing that a statutory footing for NDG was absent from the Queen’s Speech.

We can’t help but note – with a Data Protection Bill on its way, arbitrary data-sharing powers available in the Digital Economy Act, and Theresa May threatening to roll back human rights – that it is protections such as these that underpin the privacy of all our medical records.


What just happened?

The election put a lot on hold, but you may remember a dodgy deal with the Royal Free Hospital that got Google DeepMind into a spot of trouble with the ICO and National Data Guardian when we complained about it.

The NDG’s formal view came out during the election period, and we await the ICO’s ruling – due any day now. We are therefore entirely unsurprised that DeepMind’s “Independent” Reviewers’ report is also delayed. One might question “independence” when a whitewash coincidentally comes out a day after the regulator’s critique…

What’s happening next?

We don’t comment on every future project press release from Google DeepMind – their PR flacks cost many times our annual budget. But last week’s announcement that its next project will be to provide a hospital IT system for Taunton is worthy of some attention; the relevant detail is at the bottom of page 2 of this document.

It’s understood that companies will provide the NHS with IT systems – GPs and hospitals buy in systems all the time. But accepting ‘gift horses’ from aggressively data-seeking US info corps already known for not playing by the rules may not necessarily be wise. For one thing, as many have learned, if you’re not a paying customer you tend to end up being the product.

If, however, the decision is that the people of Taunton are most in need of better infrastructure – NHS England certainly felt they were, this area being one of the ‘pathfinders’ for the cancelled care.data scheme (more on its successor below) – then starting in Somerset is as good a place as any.

But this doesn’t mean you can ignore the regulatory implications. Or future cost.

As recently as January, DeepMind assured Regulators that its tools were not used for clinical decision making, yet in June it has signed contracts to run a hospital using it. To be used in direct care, the central IT system of a hospital is a closely regulated system – these are, after all, the systems that run Intensive Care – although Google, chasing the profits rather than patients, probably won’t choose to help those in most acute need.

Has Google started the Regulatory  process to run that system, or is it trying ‘deployment via press release’? Does it want DeepMind to mark its own homework too?

The only way for patients to know if their data was used in such a programme is for everyone to know where, when and why their medical records have been accessed. Google says it won’t use patients’ data for other purposes; our concern is that minds change. After all, the company said it wouldn’t start building this system for 3 years – that was 7 months ago.

For as long as DeepMind Health is led by an entrepreneur – and has no Chief Medical Officer who is bound by the Hippocratic Oath – its position can change, purely for business reasons. Its corporate officers may stand on stage and say they won’t, but they say many things which they change their minds about. One can be an AI visionary, or run a health infrastructure service – but people have every right to be nervous when you try to do both, especially if you claim you aren’t doing so.

It is inevitable that the future model for this service will be ‘AI assistants’ offering hints and references to doctors via the Streams app; the principle of A&E triage, applied hospital-wide.

This being the case, if these AI systems are modular and compartmentalised for the delivery of care, then they can each be regulated separately. If, however, the individual systems are not interoperable and transparent, then the entire infrastructure must be regulated tightly. (Research, i.e. the development of such systems – including the justification, with evidence, of what data they actually need – is already regulated, by MHRA and other bodies.)

Until the situation is clear, questions as to whether DeepMind’s approach to Regulators is the same as Uber’s (they do, after all, share investors) will remain.

We should point out, as DeepMind buried it in the small print, that no money is changing hands here – and neither party is obligated to do anything. This may yet be just another Silicon Valley startup (the TV show, that is – not the place) that puts out a stream of press releases, delivering for investors over patients.

 

What’s happening where you live? And what can you do?

Wherever you live, in England, there are changes coming to your local NHS.

The ever-so-subtly again renamed STPs (now “Sustainability and Transformation Partnerships”, not just Plans) and their further regional reorganisation – over “several years” – into Kaiser Permanente-style Accountable Care Organisations represent the Government’s and NHS England’s view of the future.

Bearing in mind the massive democratic deficit in the NHS, will accountability be to patients or to the analogue administrators?

Given that – most of the time at least – care records follow patients, one of the best ways to see how the NHS works is to look at the data trail that you leave behind you.

So if you have a login for your GP practice’s website, we encourage you to look at the letters that have been scanned into your record, and to simply count the logos. (If you don’t already have a login for online access, here’s how to get one.) Then, as your NHS changes over the next few years, keep count; over time do you see more commercial logos, or fewer?

While you’re at it, you might also want to check who’s accessed your GP record. Both EMIS and TPP have now switched on basic access to your GP record’s ‘audit trail’ – and as more and more people use it, this vital transparency feature should improve over time.

Things are clearly going to stay busy for a good while yet. Four years in, medConfidential exists entirely through your donations and the generosity of the Joseph Rowntree Reform Trust, to whom we are applying for a further grant. We appreciate all donations – and your support helps with other funding.