Doctors’ leaders have cautioned ministers about patients’ concerns regarding the potential misuse of their personal data by the NHS’s new data store, particularly if it is managed by the US technology firm Palantir.
The proposed development of the “collective data platform” (CDP) has raised worries regarding privacy and confidence in the National Health Service (NHS), with some suggesting that distrust towards it may result in patients declining 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 contract for the health service is likely to be given to Palantir, a data analytics company with connections to the CIA and the Pentagon, despite concerns from Conservative, Labour, and Liberal Democrat politicians about its appropriateness.
The BMA has sent a letter to the health secretary, Steve Barclay, expressing several worries about the FDP. These concerns include the potential lack of public input and ethical screening of potential bidders, which could lead patients to avoid it.
According to a letter from Dr. Latifa Patel, the head of the BMA’s representative group, there is a risk that the FDP (Future Doctor Program) may face the same lack of public and doctor support that caused the failure of the NHS’s previous two attempts to consolidate patient data into a single location.
According to her, there has not been enough consultation and assurance from both the public and the profession. Additionally, it seems that the extent and size of the program have not been clearly determined.
It is unclear if a thorough ethical review has been conducted for all potential vendors. This lack of action has led to speculation about Palantir’s role, intentions, and involvement in the NHS data system, causing patients to worry about the protection of their private information.
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.”
Chris Whitty, the top medical official in England, has stated that the FDP (Funding Delivery Plan) will enhance patient care, increase the efficiency of the NHS, and support medical research.
During a parliamentary discussion this week, David Davis, a former Brexit secretary for the Tory party, cautioned against the decision to grant Palantir the contract. He expressed to fellow MPs, “To be frank, this is not the suitable company to oversee our valuable data resource. Even if it were to act appropriately, no one would have confidence in it.”
Angela Rayner, the deputy leader of the Labour Party, along with Philip Hunt, a former health minister for Labour, and Sal Brinton, a peer for the Liberal Democrats, have expressed concerns.
According to Sam Smith, a member of the organization MedConfidential, NHS England plans to transfer all data from the NHS to Palantir before seeking public approval. This may result in the public rejecting the decision.
According to the Health Service Journal, Ming Tang, the chief data officer of NHS England, addressed concerns about the role and security of the FDP at the digital health AI and data conference last week. She reassured attendees that data and trust are important considerations when using platforms and questioned who is responsible for providing them and the potential risks to data security.
However, she refuted the notion that the data stored by the FDP would be considered a “massive data lake” and dismissed comparisons to care.data, one of the NHS’s previous unsuccessful big data initiatives.
The Department of Health and Social Care stated that incorporating data would enhance the quality of NHS services. They also mentioned that NHS is currently in the process of procuring a supplier for the federated data platform (FDP). This platform will connect existing data to assist local health teams in prioritizing waiting lists, managing theatre capacity, and identifying staffing needs. The spokesperson clarified that this process is still ongoing and has not yet been finalized.
The information of patients will always be fully controlled and protected by the NHS and will not be available to the software company.