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Crowdfunder
The NHS wants to hand your medical records to a Trump-supporting billionaire's spy-tech firm – we need your help to protect your rights
People trust their healthcare providers with the most intimate kinds of personal information – and the NHS can’t do its job without that trust.
There have been a number of scandals recently about the NHS giving our medical records to companies and private healthcare corporations. In May 2022, the Observer reported that Virgin Care was misusing our data. When the data arm of our health service, NHS Digital, tried to act, Virgin Care refused to cooperate and it also refused to delete the data.
You’d be forgiven for thinking that the NHS would now be more careful about sharing our medical records. But you’d be wrong. In fact, the NHS seems poised to give a massive data contract, worth nearly half a billion pounds, to a company called Palantir. It’s possibly the dodgiest company ever to gain access to our NHS medical records. So who is behind Palantir?
Palantir, founded and chaired by Peter Thiel, a Trump-supporting US billionaire who is on record opposing the NHS, claiming it “makes people sick”. It has been described as one of America’s “scariest” tech giants, and one of its first investors was the CIA.
Palantir‘s technology has already been hugely controversial, having been used by Immigration and Customs Enforcement (ICE), the aggressive US federal law agency which has faced numerous allegations, including that it separated children from their parents, wrongfully detained thousands of US citizens and forcibly sterilised women in its facilities.
NHS England claims we have nothing to worry about, because the information it will share under this new contract is “pseudonymous,” meaning that identifying details will be removed. But the truth is, it’s not hard to piece together anonymised information which could lead to patients being identified. And do you really want a company like Palantir knowing what’s in your medical records?
We don’t. That’s why we’re working with prospective claimants to make sure that every patient can properly protect their privacy. The law guarantees you the right to object to your data being processed – but when patients tell NHS England that, they’re pointed towards a ‘National Data Opt-Out’ system with a confusing series of exceptions and carve-outs. It’s not clear whether this system is up to scratch. But we must have clarity and transparency about how our data will be processed and used.
If you are in a position to donate, any amount big or small would help us fight to protect data rights at the NHS. Your donations will be used to fund specialist lawyers to examine how NHS bodies treat patients’ requests to keep their data private, so we can ensure they’re acting in accordance with the law – and help us set things right if not.
24/11/23 The above text has been updated to clarify the aims of this litigation. Since we published the original version of the text, the NHS has confirmed that it is not possible to opt out of sharing patient data with the Federated Data Platform and therefore Palantir. We have updated the text to read:
‘That’s why we’re working with prospective claimants to make sure that every patient can properly protect their privacy.’
Details
Your donations will be used to fund hiring specialist lawyers to examine how NHS bodies treat patients’ requests to keep their data private – and help us set things right if not.
10% of the funds raised will be a contribution to the general running costs of Good Law Project. It is our policy only to raise sums that we reasonably anticipate could be spent on the work we are crowdfunding for. However, if there is a surplus it will go to develop and support further work we do to fight for a better fairer future for all.
Crowdfunder Updates
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21/11/2023
US tech giant has landed NHS contract – we’re fighting back
NHS England has announced the award of a huge data contract to the controversial US-based tech giant Palantir. The company was co-founded by the rightwing entrepreneur Peter Thiel, who’s been very critical of our NHS and has been reported as claiming that it “makes people sick”. Is this the type of man you would feel comfortable with handling your personal health records?
Back in July, we warned that the NHS might award Palantir this contract – despite widespread concerns. Now the company will be running the Federated Data Platform for the next seven years.
While we fully understand that the NHS needs to store information about patients, people should be able to have control over where else that data is used.
The Health Secretary, Victoria Atkins, claims that “the safety and security of patient data is front and centre of this new system.” But the way in which NHS data is currently being processed lacks transparency, and it looks like patient data is being mishandled. We expect the situation to get worse now Palantir is in charge.
Only eight of 36 NHS trusts in England known to be piloting the platform have been willing to cite any specific benefits from it, according to the Health Service Journal.
We are now preparing legal challenges to make sure the NHS handles our sensitive data properly, with a clear mechanism so that we can all take meaningful steps to keep private health information private.