Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure (a) transparency and (b) public trust in the collection and sharing of NHS patient data.

Strong public trust is critical for the collection and sharing of National Health Service patient data, and transparency is key to building that trust and retaining public confidence.

NHS England publishes a range of documentation to maintain transparency about how data is used. These include:

- directions made by my Rt Hon. Friend, the Secretary of State for Health and Social Care, to NHS England to establish information systems;

- Data Protection Impact Assessments and other documentation, which provide information on how the information will be used in particular programmes; and

- data use registers that include details of external data sharing agreements and are published monthly. All NHS Research Network Secure Data Environments also maintain a data use register that includes details of data access agreements.

Statutory roles and functions have also been established to provide confidence and assurance that data is used lawfully and for the benefit of patients. The Confidentiality Advisory Group of the Health Research Authority (HRA), provides independent, expert advice to the HRA, and to my Rt Hon. Friend, the Secretary of State for Health and Social Care, on the use of confidential patient information, and their minutes and a register of the applications and decisions made are published. The National Data Guardian (NDG) provides advice to help ensure that people’s confidential information is kept safe and used properly. The eight Caldicott rules established by the previous NDG set out key principles for the use of confidential information, including that individuals are informed about how their data is used. Caldicott guardians in every NHS organisation work to ensure these principles are upheld. The NDG publishes an annual report on their work and objectives.

To further build trust, we are delivering a national programme of large-scale public engagement on data which will reach over 6,000 people across England, representative of our diverse communities. This provides the opportunity for us to meaningfully involve the public in decisions and changes to how their health data is used, and complements smaller-scale activities carried out by data programmes throughout the NHS.