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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 was founded and is chaired by Peter Thiel, a Trump-supporting US billionaire who is on record opposing the NHS, claiming it “makes people sick” and comparing British people’s affection for the NHS to “Stockholm syndrome”. 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 the American legal agency, Immigration and Customs Enforcement (ICE). ICE 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 a prospective claimant to make sure that every patient can opt out of having their information shared with a private company like Palantir. 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.
We’re also looking for more people to join this work, to make sure everyone gets to have a say over whether or not they are happy for their medical records to get into the hands of a company like Palantir.
We especially want to hear from people whose medical records are particularly sensitive. Good Law Project will cover all costs and manage the work, and we can apply for anonymity orders if you’d prefer to get involved on an anonymous basis. The more of us who stand up and say no to companies like Palantir making millions from our medical records, the safer all our data will be.
If you’d like to be part of our challenge, please contact us on firstname.lastname@example.org.