The NHS insists that whichever company builds the system, it will be the NHS that decides how the data flowing through it will be used. “The NHS does not take trust for granted, which is why the successful provider of the federated data platform will only operate under the instructions of the NHS and will not control the data on the platform, nor will it be authorized to access, use, or share it for their own purposes,” says NHS’s Tang. “We also have explicit safeguards in place to prevent any provider from taking a dominant role in the management of NHS data.”
Yet this message did not allay public fears that this data could be monetized at a later date.
“We would be concerned about the involvement of an external for-profit company in healthcare,” says David Wrigley, vice-chairman of the British Medical Association’s GP committee in England, adding that he would prefer that the NHS builds this system itself. “We believe healthcare should be financed through taxation and there should be no element of profit, which would include the use of data and how patient records are processed. »
Palantir denies claims it cannot be trusted to manage NHS data and would monetize it in some way. “These claims result in a misunderstanding of how this software is used,” says McArdle. “Unlike many other technology companies, we are not in the business of collecting, extracting or selling data. Our mission is to provide tools that help customers understand and organize the information they hold, as well as training and support in using these tools.
But the opposition to Palantir’s role – should it win – is not just about the facts of the contract, but also about the fact that there is a contract. Many critics argue that the NHS should train the teams needed to carry out this type of work itself. “There are now far fewer digital experts in the NHS,” says Wrigley. “This is because the government has decided to significantly reduce funding. It’s a sort of self-fulfilling prophecy.
If Palantir wins the contract, researchers fear NHS patients will refuse to share their data with any part of the NHS in protest. The last time the NHS tried to introduce data sharing for research purposes, more than a 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 shown that the public is happy to share data with commercial organizations if the relationship is based on honesty and transparency and has a clear public interest. “There has been no public debate around this contract, so it gives the impression of secrecy, that there is something to hide.”
Even after her experience, Marianne is hesitant to call on Palantir, a company she’s never heard of, to solve the NHS data problem. “I think we would probably feel more comfortable if it was just the NHS and not a private company,” she says. “Anyway, I suspect that ship has sailed.”
