Legal action launched: no legal basis for the £330 million Palantir NHS Federated Data Platform
Together with our partners Just Treatment, the Doctors’ Association UK and the National Pensioners Convention we have launched legal action challenging the £330m NHS Federated Data Platform (FDP). Last week the contract for it was awarded to US spy tech company Palantir.
The FDP is the largest centralisation of our health data in the history of the health service.
We’ve looked at the legal case for the FDP – and it appears to be built on quicksand.
Our case argues that the government has no legal basis to go ahead unless they come back to parliament to explain how data will flow into the FDP while still complying with the law.
We’ve sent what’s called a “letter before claim” to tell the government they need to urgently explain how the FDP will comply with the law. If they refuse, we’ll see them in court.
We’re worried that this is a waste of precious NHS money. We all want the NHS to use data better for the good of the NHS. But from the evidence we’ve got, it looks like this system – run by Palantir – will make things worse, not better.
Foxglove has made no secret of the fact we don’t think Palantir is a fit partner for the NHS. You can look at the facts and make up your own mind on that one.
If patients don’t trust it, and hospitals don’t want it, then the FDP will fail. This would be yet another costly data failure that the NHS simply cannot afford.
If you would like to support this legal case, you can do so here on the Crowdjustice site. If you would like to hear more about the case as it develops and others like it, please sign up here.
There are multiple issues with the plans for the FDP:
Opt outs
The government has serious questions to answer about opt outs and the FDP. So far, they’ve flip-flopped like a fish out of water.
On November 25, the Times reported: “The opt-out refers to the use of people’s information for research purposes, and does not apply to the federated data platform.” The next day, November 26, the Sunday Times said: “Patients can also opt out of the federated data platform, should they wish.” These conflicting statements presumably came from the government/NHS press teams – so something doesn’t add up.
The BBC asked an NHS official directly if you could opt out of the FDP. They said: “You cannot opt out but you can ask [your hospital] questions.”
That is not a serious answer. Is the government seriously suggesting that calling overstretched hospital staff to ask for answers to vague “questions” about how they are sharing your NHS record is likely to get you very far?
No-one wants to see more people opting out of sharing their data with the NHS. But many may feel they have no choice if they don’t know who’s going to get their hands on their data – especially when the government hasn’t bothered to explain clearly or seek patient consent.
There’s good reason for people to be concerned. In 2018, the government had to scrap a plan to use the NHS records of immigrants to find and deport them after an outcry from MPs and civil society. But a new version of the plan is in the works.
While last month, it was revealed that talks had taken place to share data between the DWP and NHS to “profile” benefit claimants for weight-loss injections.
As for profit-making companies, polling with YouGov found that if the FDP is opened up to private firms, almost half (48%) of NHS patients in England, who have not yet opted out, will do so. If even a fraction of that number opt out it could do catastrophic damage to the value of NHS data.
The only way to end the threat of mass opt outs is for the government to make a cast-iron commitment that our data will never be shared with private companies or other parts of government, like the Home Office or the DWP, without patient consent.
The government has tried to weasel its way out of this by saying that data will only be shared, for purposes beyond direct care, in de-identified form. That’s not good enough.
Conservative MP David Davis has explained at length that de-identified health data, whether ‘anonymised’ or ‘pseudonymised’ can be re-identified relatively easily because the data in a person’s health record is so detailed.
That’s why the cast-iron commitment not to share data with either commercial companies or other parts of government must apply to all health data – even if it has been de-identified.
Value for money
There are also serious concerns over whether Palantir’s kit actually works – and whether hospitals want it.
The NHS has run 36 pilots of the FDP around the country using Palantir’s platform, Foundry. The paper of record for the health industry, the Health Service Journal, rang round all 36 to ask if they were seeing benefits. Just eight, less than even a quarter of them, said they had.**
One of the trusts that said they’d not seen any benefit was Milton Keynes University Hospitals FT, considered to be one of the most digital-forward trusts in England. The CEO at Milton Keynes is Joe Harrison, the National Director of the NHS App, so this failure can hardly be blamed on a lack of technical expertise.
The FDP is going to cost hundreds of millions of pounds of NHS cash that won’t be spent on doctors and nurses providing frontline care. If the FDP isn’t going to benefit three quarters of the hospitals in the country, can we seriously say it’s worth that money?
Doctors speak out
You don’t have to just take our word for it. Doctors are worried too. The Doctors Association UK has published an open letter calling on the government to “rethink” the FDP, saying: “This deal represents a poor deal for taxpayers and for patients.”
The letter was signed by Sir Richard Thompson, former chair of the Royal College of Physicians.
The doctors union, the BMA, has also written to the government warning that an FDP run by Palantir would cause patients to fear their data was being “misused” which could “damage the NHS”.
So there you have it. As it stands, doctors don’t want the FDP, hospitals don’t seem to want it either and the government can’t seem to make up its mind on what say, if any, patients will have on how their data flows into it and is used afterward.
That’s why we need to make sure that if the government wants to bring in the FDP, they must do so in a way that obeys the law, honours the democratic right of all of us to have a say in how our personal health data is used and ultimately benefits the NHS.
To stay updated on this case, hit the button below:
**The HSJ has now updated this story to say a total of 42 FDP pilots are being run around the country, with only nine reporting benefits.