Patients fear that their personal information may be misused by the NHS’s new data store, especially if the US spy technology company Palantir runs it, doctors’ leaders have warned ministers.
The planned creation of the “federated data platform” (FDP) has prompted concerns about privacy and trust in the NHS and suggestions that suspicion around it will lead patients to refuse to share their data.
NHS England has completed the process of deciding which of the several tech companies that bid will be handed the £480m contract and it is preparing to unveil the winner shortly. The FDP will bring together huge amounts of patient data currently held separately by NHS trusts and integrated care systems in an attempt to improve officials’ decision-making. It will not involve data held by GPs.
The health service is widely expected to award the contract to Palantir, a controversial data analytics company with close ties to the CIA and the Pentagon, despite Conservative, Labour and Liberal Democrat politicians voicing unease about the its suitability.
The British Medical Association (BMA) has written to Steve Barclay, the health secretary, setting out a range of “serious concerns” about the FDP, including that an alleged lack of public consultation and of vetting of bidders on “ethical” grounds may encourage patients to shun it.
Dr Latifa Patel, the chair of the BMA’s representative body, said in the letter that the FDP could end up falling victim to the same lack of support from the public and doctors that sank the NHS’s last two attempts to pull an array of patient data together into one place.
“The public and the profession have not been adequately consulted and reassured and the scope and scale of the programme do not appear to have been sufficiently established,” she said.
“It is not apparent that a full and considered ethical review has been carried out against all potential vendors, and in the space left by this inaction, speculation about the role, purpose and scope of Palantir, as well as their existing involvement within the NHS data architecture, has cultivated fear among patients of how their confidential data will be handled.”
Doctors and patients need to know that “sensitive and confidential patient data will not be used for commercial gain”, she said. “It is imperative that reassurance be given to patients and our profession as soon as possible to stem the number of people choosing to opt out of data sharing. Far from creating a platform that will support decision-making, the continuation of this programme without full and proper public consultation stands to damage the NHS.”
Prof Chris Whitty, England’s chief medical officer, has said the FDP will improve patient care, make the NHS more effective and help boost medical research.
In a parliamentary debate this week, David Davis, the Tory former Brexit secretary, warned against Palantir being awarded the contract. He told MPs: “Bluntly, it is the wrong company to be put in charge of our precious data resource. Even if it behaved properly, nobody would trust it.”
Labour’s deputy leader, Angela Rayner; the Labour former health minister Philip Hunt and the Lib Dem peer Sal Brinton have also voiced unease.
Sam Smith, of the campaign group MedConfidential, said: “NHS England expects to copy all data from the NHS into Palantir and then get public support for doing so afterwards. The public may say no.”
Ming Tang, NHS England’s chief data officer, sought to reassure people about the FDP’s role and security when she spoke last week at the digital health AI and data conference. “Everyone’s got data concerns and therefore [concerns about] trust in the platforms that we’re using, who’s providing those platforms and whether something bad’s going to happen to the data,” she said in remarks reported by the Health Service Journal.
But she denied that the information held by the FDP would be “a massive data lake” and rejected comparisons between it and care.data, one of the NHS’s two previous failed big data projects.
The Department of Health and Social Care said more joined-up data would improve NHS care. “That’s why the NHS is currently conducting a procurement process for a supplier of the federated data platform (FDP), which will be used to connect existing data to help local health teams better prioritise waiting lists, manage theatre capacity and identify their staffing needs. This process has not yet concluded,” a spokesperson said.
“Patients’ data has and always will remain under the full control and protection of the NHS, and it will not be accessed by the company that makes the software.”
