Thu. Dec 7th, 2023
    Concerns Over Lack of Patient Opt-Out in NHS’s New Data Platform

    Public trust in the NHS’s new data platform is at risk due to the absence of an option for patients to opt out of sharing their personal medical records, according to campaigners. NHS England has awarded a £480m contract to US-based Palantir to operate the new software, sparking privacy concerns due to the company’s controversial history. The backlash surrounding the announcement has been compounded by MPs, doctors, and privacy campaigners who argue that patients should have the right to refuse permission for their medical history to be shared across different NHS bodies through the federated data platform (FDP).

    NHS England asserts that an opt-out option is unnecessary because patient data will be anonymized before sharing, ensuring the protection of their identities. Additionally, the FDP is intended for direct care purposes. However, this stance has drawn criticism. Foxglove, a group monitoring big tech’s relationship with government, accuses NHS England of backtracking on earlier indications that patients would have the right to opt out.

    NHS England initially stated in its FAQs that the national data opt-out policy would be applicable to relevant data in the FDP, giving patients the ability to opt out of sharing their confidential patient information for purposes beyond individual care. Yet, in a subsequent document update, patients were explicitly denied the option to opt out of data sharing for the FDP, but only for research and planning purposes.

    This contradiction poses a challenge to the trust-building efforts of NHS England. A health minister, Nick Markham, previously assured MPs that the rights and choices of individuals to opt out would be made clear. The existing national data opt-out policy was referenced as applicable to relevant data in the FDP.

    Lawyer and Foxglove director Cori Crider argues that the zigzagging stance on the opt-out right undermines confidence in data-sharing and risks hindering people’s willingness to contribute their data for the betterment of the NHS. Crider even hinted at a potential legal challenge to ensure that patients retain the right to decide who has access to their health records beyond direct care.


    Q: Can patients opt out of sharing their data with the federated data platform?
    A: No. Patients can only opt out of sharing their data for research and planning, not for direct patient care.

    Q: What is the national data opt-out policy?
    A: The national data opt-out policy allows individuals to choose whether their sensitive personal information can be used more widely in the health service.