An NHS project to incorporate tens of millions of personal digital medical records into one of the biggest health data platforms in the world is to be launched without seeking new patient consent.
Health officials confirmed this weekend the proposed £360m new data platform for England will incorporate the NHS shared care records that track patients across the health and care system.
The American software firm Palantir, which is chaired by the billionaire Donald Trump supporter Peter Thiel, is considered the favourite to win the contract. The firm has hired two senior officials from the NHS and has been advised by Global Counsel, the consultancy firm set up by the former Labour cabinet minister Lord Mandelson.
Ministers have disclosed in parliamentary answers that the patient information project does not require a public consultation before the five-year contract is tendered or additional patient consent. They say the project, called a federated data platform, will help improve care and provide new insights into the nation’s health.
Clive Lewis, the Labour MP, said: “This looks like the contract has been set up to hand it to Palantir. There should be a proper debate about the use of this data so people can make an informed choice.”
Campaigners warn the government risks undermining public trust with plans to “shove hospital data” into a private contractor without proper consultation. They say patients have a “legal right to a say”.
Palantir was co-founded in 2003 by Thiel, a tech entrepreneur and major donor to the Republican party. It has done extensive work for the intelligence sector and was originally funded by In-Q-Tel, the CIA’s venture capital arm.
Winning the contract would be a coup for Palantir, which was initially contracted to work with the NHS during the Covid pandemic on a nominal fee of just £1. It went on to win a £23.5m contract in December 2020 to provide real-time information on disease prevalence and vaccinations during the outbreak.
Cori Crider, director of the legal campaign group Foxglove, said: “[Palantir] is a company that has worked with border forces, spies and police. They’ve got no place in the NHS.”
The contract notice for the project is waiting to be signed off by the health secretary, Steve Barclay, and “will be issued in the coming weeks”. One official said the new project will help “reduce waiting times, speed up diagnosis and get people home quicker”.
Shared care records, which were launched in April 2021, are being rolled out by integrated care boards, the newly formed partnerships of NHS bodies, local authorities and other organisations.
The records contain a wide range of information including name, address, date of birth, health conditions, medications, medical notes, social care and safeguarding information. The records will be “de-identified” for wider use on the proposed NHS platform for research and analysis to provide better targeted care.
Under the proposed new project, the information is not consolidated into one central database, but can be analysed in hundreds of different systems across England. Ministers say information will be transferred from existing datasets that already have “a lawful basis for collection and processing”.
One official said: “Only people with a need to access patient identifiable information in a shared care record will be able to access information pulled from the record for use in the platform.”
Phil Booth, coordinator of medConfidential, which campaigns for confidentiality and consent in health and social care, has described the federated data platform project as “the veins through which patient data would flow”. He said there should have been a consultation and detailed information on the legal justification for the proposed use of patient records.
The NHS has failed to win public trust in previous schemes to use sensitive patient data. A plan to share GP records for research stalled last year after being criticised by campaigners as a “data grab”.
NHS England has already instructed NHS Digital, the national provider of health data and information, to use Palantir’s operating platform called Foundry to collect patient data from acute trusts, including a person’s NHS number, date of birth, postcode and data about admission and inpatient activity. The data is given a pseudonym before it is shared with NHS England. Palantir also has a project working with hospital trusts to reduce waiting lists.
Dr Nicola Byrne, the national data guardian, said her office was advising the government on public engagement. She said: “I strongly agree with the aims and ambitions of the federated data platform programme. Improving access to high-quality data is key to improving health and care outcomes.”
NHS England officials say they will now develop a public pact over safeguards of medical data, outlined in the government’s data saves lives policy paper published in June. They also want to promote the benefits to the public of using NHS data to speed up diagnosis and help clinicians reduce waiting times.
An NHS spokesperson said the contract was an open tender and several companies had expressed an interest. They added that the firm that won the contract would not be permitted access to the data or allowed to share it for its own purposes. It is expected to be awarded by summer 2023.
The spokesperson said: “Data platforms are already being used by NHS trusts to reduce cancer waiting times, speed up diagnosis, treat and get people home quicker. We want to extend the benefits across England.
“Maintaining public confidence in how the NHS handles their personal information is paramount. We have some of the most robust safeguards in the world for data, and worked extensively on these proposals with privacy groups, clinicians and patients.”
A Palantir spokesperson said: “We’re incredibly proud of our support for the NHS. Our software helped the NHS to save thousands of lives by powering the Covid vaccination programme. It is now helping to reduce the elective backlog in hospitals.”
The firm says it sells software products and does not monetise or collect personal data.
