MARIANNE WAS EXPECTING the phone call to be quick. She had just moved house and what she needed was for her new doctor to issue the medications she usually received from her old doctor. But as she stood in her hallway, surrounded by boxes, the writer and mother of two felt the stress inflating inside her as she realized this was not going to be easy. Marianne, speaking using a pseudonym to keep her medical details private, had only traveled 200 miles (300 kilometers) from southern England to the Midlands, but it felt like she’d moved to a different country.
This new doctor knew nothing about her—her multiple chronic conditions, or the list of around 20 medications she needed to manage them—and asked her to detail her entire medical history on the spot, and to list the names and dosages of drugs she’d been prescribed over the years.
In theory, patients in the UK’s free-to-use National Health Service (NHS) should be able to transfer their data when they change doctors. But in practice it doesn’t always work. “It was me that had to do all the running around,” says Marianne. In the end, it took her an entire month to get the details of her own prescriptions.
The vast majority of people in the UK use the NHS for medical treatment. Every day that means around 1.3 million appointments with doctors, 260,000 hospital appointments, and around 675 people entering serious, critical care. Each of those interactions creates new records in the system. But that system is made up of tightly controlled silos. Health care staff can’t easily access information about their patients from different parts of the service, even if those patients ask them to. For years, the NHS has tried to build a computer system to manage the vast amount of data it generates. So far, it’s failed, most recently due to public uproar over privacy. Now it’s trying again, issuing a contract to build a central operating system that will allow anonymous patient data to move more freely around the service—between different departments in one hospital, from hospitals to the social care system, and in some cases from general practitioners' offices to local authorities.
The NHS argues that this new system—officially known as the federated data platform—will improve care for patients. “A federated data platform will connect data and improve decisionmaking by bringing different systems together in one secure environment,” says NHS England chief data and analytics officer Ming Tang. The health service has previously said the contract winner would be announced by the end of September.
The idea isn’t controversial. However, the front-runner in the bidding to build the system is. Doctors, privacy campaigners, academics, and politicians from the ruling Conservative Party have expressed concern about the favorite to win the £480 million ($595 million) contract, the US tech company Palantir. Palantir’s cofounder is Peter Thiel, a prominent donor to former US president Donald Trump’s political campaigns. One of its early backers was the investment arm of the CIA. Its technology has allegedly been used to detain migrants in the US and direct drone strikes in Afghanistan. With that heritage, they wonder, can Palantir really be trusted with the NHS’s data?