Transparency data

Minutes of the National Data Guardian Panel Meeting, 12 May 2026

Published 13 October 2026

Applies to England

Attendees

Panel members

• Dr Nicola Byrne (chair)
• Dr Natalie Banner
• John Carvel
• Claire Delaney-Pope
• Dr George Fernie
• Dr Fiona Head
• Dr Jeffry Hogg
• Mr Adrian Marchbank
• Dr Jess Morley
• Professor Daniel Ray
• Dr David Sharp
• Rob Shaw
• Professor James Wilson

Office of the National Data Guardian team

• Nishat Ahmed
• Dr Vicky Chico
• Rachael Merrison
• Karen Swift

Observer

• Helen Dyer

1. Welcome, apologies, and declarations of interest

National Data Guardian (NDG), Dr Nicola Byrne, chaired the meeting.

• Apologies were received from Maisie McKenzie and Jenny Westaway.

• The panel was advised that the Office of the National Data Guardian is undergoing a period of staffing change and received a brief update on recent and planned workforce developments, including phased returns, recruitment activity, an upcoming leaver, and a period of reduced capacity across the team.

2. Minutes from previous meeting, actions, and decisions

Panel members accepted the minutes from its 17 March 2026 meeting.

There is one open action. All other actions were agreed as having been completed prior to this meeting.

3. Key updates

Dr Nicola Byrne presented key updates. These included: a Not With My NHS Data campaign about undocumented access to patient data by external contractors in the NHS Federated Data Platform’s National Data Integration Tenant; the regulations in the Health Bill underpinning the Single Patient Record programme; and governance of UK Biobank data. Broader issues were also covered, such as the need for comprehensive technical guidance on effective pseudonymisation. Particularly with regard to the risk of re‑identifying individuals and the flow of data internationally.

Confidentiality Matters Campaign

The panel received a further update on the proposed NDG campaign to support good practice in staff access to patient records. The project remains at an early stage, with ongoing evidence‑gathering and stakeholder engagement informing its development.

4. Data opt-out reforms update

Representatives from the Department of Health and Social Care (DHSC) presented proposals to reform data opt‑out arrangements and provided an update since the previous discussion in November 2025.

To aid development of the proposals panel members emphasised the importance of maintaining simplicity, clarity, and alignment with public expectations. Overly complex approaches could be difficult to communicate and implement, potentially undermining public confidence.

Panel highlighted the risks associated with creating choices that are difficult to implement, thereby potentially making them inauthentic. Panel emphasised that effective implementation is as important as policy design. Thus, issues such as, operational and system constraints, supplier capabilities, and delivery models as well as creating a process which is understandable were thought to be critical to success.

Members stressed the need to ensure any reforms proposed are clear and proportionate. Testing proposals with the public and stakeholders was strongly supported. It was also noted that, whilst awareness of data opt‑outs exists, understanding where to learn about and access the opt out choice remains limited.

Clear and effective layered communication will be crucial. Members emphasised the importance of transparency about how opt‑outs work in practice and how individuals’ choices are upheld, whilst not underestimating the public’s ability to understand complex issues when clearly explained.

The panel welcomed the opportunity to contribute to this work and emphasised the importance of continued engagement with the public and stakeholders as proposals are developed and tested.

5. Any other business

No further points were raised.