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.
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…
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.)
Phil Booth & Sam Smith
24th March 2017