These comments were made by Thiel in a private capacity, says Palantir’s McArdle. “Our CEO has made it clear he disagrees with them and that he wishes ‘we had a health care system in the US that served the poor and underserved as well as I perceive the British system does.’”
There is a lot of speculation in the UK about exactly what data Palantir would handle, and how that data would be used.
Zhang says that there are three pools of “de-identified” data—i.e., data that has had patient names and other identifying marks taken out—that could potentially be included in the system.
The first is primary care data. That’s simple to extract; it just sits on, say, your general practitioner’s computer system. The second is hospital data used for payments, which is basically an Excel spreadsheet of every patient who has come in for care and the treatment they received. The third type of data is the hardest to get to, which is the data locked behind individual hospitals’ systems. This type of data is the granular day-by-day data, like the notes that doctors write or clinic letters, and traditionally it’s been tricky to get at, as it’s all locked behind proprietary software. There are 20 to 30 different hospital systems in the NHS, and every one is like a separate company, says Zhang.
The NHS insists that whatever company builds the system, it would be the NHS that decides how data flowing through it is used. “The NHS doesn’t take trust for granted, which is why the successful supplier of the federated data platform will only operate under the instruction of the NHS and will not control the data in the platform, nor will they be permitted to access, use, or share it for their own purposes,” says the NHS’s Tang. “We have also put in place explicit safeguards to prevent any supplier gaining a dominant role in NHS data management.”
Yet that message hasn’t dispelled public fears that this data could be monetized at a later date.
“We would have a concern about any external profit-seeking company being involved in health care,” says David Wrigley, deputy chair of the British Medical Association’s GP committee in England, adding that he would prefer the NHS to build this system itself. “We think health care should be funded by taxation and there should be no profit elements—that would include the usage of data and how patient records are handled.”
Palantir denies allegations that it can’t be trusted to manage NHS data and would monetize it in some way. “What these claims do is fundamentally misunderstand how that software is used,” McArdle says. “Unlike many other technology companies, we’re not in the business of collecting, mining, or selling data. What we do is provide tools that help customers understand and organize the information they hold, along with training and support in using those tools.”
But opposition to Palantir’s role—should it win—isn’t just about the facts of the contract, but the fact there’s a contract at all. Many critics argue the NHS should be developing the teams to do this type of work itself. “There are far fewer digital experts now in the NHS,” says Wrigley. “That’s because the government decided to cut back on a lot of funding. It’s a sort of self-fulfilling prophecy.”
If Palantir does win the contract, researchers are worried NHS patients may decline to share data with any part of the NHS in protest. The last time the NHS tried to introduce data-sharing for research purposes, more than 1 million people opted out within a month. “What’s going to happen here will be hugely damaging to people’s trust,” says Barbara Prainsack, a professor at the University of Vienna whose research explores the social, ethical, and regulatory dimensions of data in medicine. Research has found that the public is happy to share data with commercial organizations if the relationship is built on honesty and transparency, and has a clear public benefit. “There wasn’t a public debate around this contract, so this gives the impression of secrecy, that there’s something to hide.”
Even after her experience, Marianne has reservations about enlisting Palantir—a company she’s never heard of—to solve the NHS’s data problem. “I think we probably would feel more comfortable if it was just the NHS and not a private company,” she says. “Anyway, I suspect that that ship has sailed.”