After ten months of attempting to extract medical information from 55 million citizens in England, the former chairman of NHS Digital is expressing concerns about the privacy of personal data due to the merger of the agency with NHS England. In an article for the British Medical Journal, Kingsley Manning criticizes the decision to merge NHS Digital into NHS England and NHS Improvement, considering it a “retrograde step” that poses risks to patient data privacy. Manning argues that eliminating the independent statutory body of NHS Digital, which was tasked with defending patient rights, and transferring its powers to NHS England is a significant mistake. With this move, NHS England gains the authority to prioritize its interests over those of citizens without external constraints or scrutiny, raising issues of transparency and citizens’ ability to inquire about data use.

Manning highlights the potential lack of transparency and increased barriers for individuals seeking information about the use of their data, emphasizing the significance of knowing how NHS England handles their data. He draws attention to the historical attitude within NHS England, where guidance and regulations related to patient data use were viewed as unnecessary, assuming patients implicitly agreed to data use by choosing the NHS. This approach may raise concerns among privacy advocates.

The concerns expressed by Manning resonate with previous delays in NHS Digital’s data extraction efforts, citing privacy campaign groups’ objections and worries from the medical profession about patients’ awareness of data use. Additionally, Manning points to NHS England’s past handling of patient data, referring to the National Data Guardian’s refusal to endorse transparency efforts regarding data flows from a project involving US firm Palantir.

Manning concludes by stressing the need for robust, external, independent scrutiny of NHS England, proposing enhanced oversight through empowering the National Data Guardian and introducing statutory requirements for transparency. He warns that the absorption of NHS Digital into NHS England signals a policy approach challenging patients’ basic rights concerning their data, potentially undermining efforts to use health data responsibly and eroding public trust in the system.