Hello again from medConfidential,
It’s been a while since our last newsletter, and if you signed up to find out if NHS England would provide more details to help you with your choices around its half-billion pound Palantir platform before it “goes live” at the end of March, the answer is now clear. They won’t.
NHS England has said pretty much nothing new in public since before Christmas. The ‘Department of Health in England’ is instead leaving you to puzzle out the process, and to do all the work. As of this newsletter, your choices boil down to this:
If you want to express your objection to your NHS data (“confidential patient information”) being used for purposes beyond your care, i.e. to opt out, you should use this paper form for your GP and post this paper form to Leeds for your kids and you.
(If you’re single and over 13 years old, this online page works only for you – and NHS England states that this opt out will not apply to the Federated Data Platform, which rather undermines it as a so-called ‘National Data Opt Out’…)
For other data flows around your direct care, you should ask your hospital doctors what your hospital currently does and what your choices are there.
Please note: in the current situation, your GP Data Opt Out is just as crucial as your National Data Opt Out.
What’s going on?
Your GP sees you as a whole patient; they know it’s important to maintain trust in your family doctor. The Department of Health in England clearly doesn’t share this concern, and – though they’re not being entirely transparent about them – NHS England’s plans and actions show they intend your GP data to be copied again and again.
For example, the Frequently Asked Questions for the Palantir Project state:
“…if there is data sharing agreement between integrated care system (ICS) and GPs locally to share data for care co-ordination then they can use the local version of FDP for that purpose.”
There are many such agreements across England, and once your data is in Palantir, it can be “federated” – i.e. copied – again and again.
NHS England’s Board were told in December 2023, “Absolutely, primary care data can go in” [time code 1:43:20] and “For direct care, it’s not in their [patients] interests to opt out, but they can” [time code 1:48:30]. And in February, the Government confirmed that GP data could be “brought in” to Palantir and Ministerial answers show they are content for NHS England to break past promises to be transparent and honest about how they use your data.
What just happened?
Last week’s Budget effectively mandated Palantir for NHS Trusts and ICSs, even after the public were told it would be ‘optional’. And the public’s views won’t even be listened to until later this year, when it may be too late for many.
Budget week obscured another unauthorised data collection of all GP records across England, which was inadvertently revealed on NHS England’s official GitHub page.
On that page, officials at the Department of Health in England stated in terms that “the aim is to grab the data” from every patient in every GP practice. (This, despite having strenuously complained at medConfidential’s characterisation of its GPDPR programme, less than three years ago, as a “GP data grab”…)
The ultimate intention, as ever, is for the Department of Health in England to sell (access to) patients’ data in one form or another. As with previous attempts, officials didn’t inform GPs, who are responsible for their patients’ data in law. Instead, a team at NHS England wrote code to simply “grab” the data… because they could.
This story is still emerging, but NHS England’s denials don’t match its actions thus far. And, as with their continued secrecy around Palantir, Department of Health in England officials don’t appear to think alternative perspectives on their intentions are worth considering – or even seeking.
Looking forward, legals and otherwise
Lawyers are lawyering about Palantir – our best advice for most people is to make your own choice for yourself and your family, and to leave the lawyers to do their work. (We’ll continue to help them.)
Legal action involves more than just ensuring government bodies follow their own rules; it’s about ensuring that they follow the law. We’ve never received clear answers from NHS England on this, only statements that they will “comply” with policies that they themselves have written to permit them to pursue their own desired actions.
This is far from reassuring. Whether it is legal or not remains to be determined.
Decisions made by the Department of Health in England’s “Privacy, Transparency, and Trust Unit” fail to provide patient privacy and professional confidentiality, have self-evidently failed to provide meaningful public transparency, and – combined with the actions of the body it is supposed to ‘challenge’ – critically undermine trust in both the process and the wider NHS. (Legally-speaking, this deficit of robust, coherent internal processes makes it unlikely NHS England will be able to present such things to a court of law.)
The Federated Data Platform was meant to “end the era of chaos” in health data. But while a platform like Palantir could in theory make secrecy much harder, NHS England seems as determined as ever to try to keep its uses of – and ambitions for – your data hidden.
Unfortunately, the next Election won’t protect your NHS data; Opposition statements and actions already show the next Government won’t do any better than the current one.
The culture of data grabs continues spreading all across UK government, fuelled by tech salesmen promoting their platforms, magic thinking about tech not people, and officials (and others) with their own agendas. And even if the companies don’t make a sale, they embolden those who seek to operate without constraints – and who disregard the rules that are there to protect you.
What you can do
If you want to express your objection to your NHS data (“confidential patient information”) being used for purposes beyond your care, i.e. to opt out, you should use this paper form for your GP and post this paper form to Leeds for your kids and you.
(If you’re single and over 13 years old, this online page works only for you – and NHS England states that this opt out will not apply to the Federated Data Platform, which rather undermines it as a so-called ‘National Data Opt Out’…)
For other data flows around your direct care, you should ask your hospital doctors what your hospital currently does and what your choices are there.
You may also want to tell your friends and other family members about this, and/or forward this Bulletin to them with a short note of your own.
Finally, if you are in a Patient Advisory Group for a hospital, an ICS or your GP practice, please do ask for official answers on what information patients will receive on the ‘Palantir Platform’ / Federated Data Platform, and what their choices will be about their care and the use of their data as a result. The (lack of) guidance and meaningful options for patients should be on record.
NHS England’s Board were told that patients would be able to make different choices about their care and their data; NHS England itself is refusing to give guidance on implementing those choices. Should this situation continue, things may come down to NHS doctors being forced to present their patients with the ultimatum, “Your data or your life” – as dictated by Palantir and the Department of Health in England.