Question to the Department of Health and Social Care:

To ask His Majesty's Government what discussions they have had with Health Data Research UK about projects that used NHS England’s data for pandemic planning and research without disclosure to a Professional Advisory Group or NHS England's Advisory Group for Data.

NHS England has a Data Sharing Agreement, project code DARS-NIC-381078-Y9C5K, with a consortium of academic organisations in the United Kingdom for the purpose of the Health Data Research UK-led, British Heart Foundation Data Science Centre’s CVD-COVID-UK programme. This agreement was put in place by NHS Digital prior to its merger with NHS England in 2023.

The agreement was subject to reviews by NHS Digital’s Independent Group Advising on Release of Data on 25 June 2020, 23 July 2020, 15 October 2020, 3 December 2020, 25 February 2021, 29 July 2021, 5 May 2022, and 24 November 2022. It was also subject to advice from the Professional Advisory Group on 24 June 2020 and 28 July 2021.

As part of the agreed process, all projects undertaken under this agreement required approval by the CVD-COVID-UK Approvals and Oversight Board. NHS Digital/NHS England had a representative on that board and through this decision-making forum, engaged in discussions with Health Data Research UK about projects that used NHS England’s data for pandemic planning and research.

For a project to proceed, approval was required from the NHS Digital/NHS England representative and from the board as a whole. Under the terms of the agreement, the CVD-COVID-UK oversight committee is required to maintain a list of projects undertaken under the agreement and must provide a quarterly report to NHS Digital/NHS England.

Subsequently, concerns have been raised by the Royal College of General Practitioners and the British Medical Association in relation to the Foresight project which was undertaken under the above agreement. NHS England has confirmed to the Royal College of General Practitioners and the British Medical Association that NHS England’s Data Protection Officer is undertaking assurance, and NHS England has met operationally with others, including Health Data Research UK, in relation to this work.