Transparency data

Minutes of the National Data Guardian Panel Meeting, 18 November 2025

Updated 13 October 2026

Applies to England

Attendees

Panel members

• Dr Nicola Byrne (chair)
• Dr Natalie Banner
• John Carvel
• Claire Delaney-Pope
• Dr George Fernie
• Mr Adrian Marchbank
• Maisie McKenzie
• Dr Jess Morley
• David Sharp
• Rob Shaw
• Jenny Westaway
• Professor James Wilson

Office of the National Data Guardian team

• Dr Vicky Chico
• Mathew Fry
• Layla Heyes
• Nisha Karadia
• 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 Dr Fiona Head, Dr Jeffry Hogg & Professor Daniel Ray.
• Dr Jess Morley declared a potential conflict of interest, as she and her colleagues are conducting a landscape review on behalf of the Wellcome Trust to assess the UK’s health data research infrastructure in preparation for the Health Data Research Service (HDRS). The Chair and panel agreed that Dr Morley would remain in the meeting and participate in the discussions.
• The panel was pleased to formally welcome Mathew Fry, who had recently joined the Office of the National Data Guardian as the Head of the Office.

2. Minutes from previous meeting, actions, and decisions

Panel members accepted the minutes from its 16 September 2025 meeting.

All actions were agreed as having been completed prior to this meeting.

3. Key updates

Mathew Fry led the key updates, summarising key Office of the National Data Guardian (ONDG) activities since the last panel.

NDG Strategic Priorities

The NDG’s Annual Report is nearing completion and will set out priorities for 2026–27.

Cyber Security, Information Governance & Inappropriate Access

In this area, it was noted that NDG supports a shift from knowledge-based training to a behaviour-focused approach recognising the training needs to broaden to internal threats as well in relation to deliberate data breaches by staff.

Single Patient Record (SPR)

The Single Patient Record Programme is underway and the NDG has provided some initial input to the options for delivery.

Control of Patient Information (COPI) Reforms

The NDG has been engaged on proposals which are currently at the pre-consultation stage, with formal consultation anticipated in February 2026.

Health Data Research Service (HDRS)

The HDRS is scheduled to launch next year, with recruitment for the CEO and Chair currently underway. Its priorities will include streamlining data access, strengthening public engagement, and ensuring a sustainable framework for its operations.

Synnovis Cyber Incident

The NDG has received updates on the learning from this incident. NHS England is preparing public-facing information and guidance for Trusts to support communication and operational resilience in the event of cyber incidents.

4. Opt Out review

Following the recent public deliberative engagement, colleagues from the Department of Health and Social Care (DHSC) attended the NDG panel meeting to discuss the current opt-out landscape and potential reforms, following the commitment in the NHS 10-Year Plan to redesign the system.

The discussion focused on proposals to improve the NHS data opt-out system, which is currently seen as complex and difficult for people to navigate. DHSC outlined the policy development process, explaining that the aim is to create a clearer and more consistent approach that balances meaningful patient choice with the NHS’s need for data. Public engagement has indicated support for maintaining an opt-out system, but with greater clarity, simplicity, and transparency desired. Recommendations include reviewing the scope for the National Data Opt-out, improving communication, and exploring more tailored options.

Panel members highlighted important considerations, including the need to carefully weigh the strength of public support for changes, the potential for boundaries to be blurred between planning and research, and minimising the need for opt-out exemptions. They emphasised the importance of strong governance, clear communication, and mechanisms to remind people of their choices over time. The group also noted the need to keep pace with developments such as AI and new data platforms. Panellists agreed that the policy process should carefully consider options and associated risks and that this was a challenging task.

5. Reasonable Expectations update

Dr Vicky Chico, Senior Privacy Specialist at the Office of the National Data Guardian, provided an update on the project, with a report due to be published in December and a communications launch planned for early next year. The research tested whether clear, simple materials can set accurate expectations about NHS data use, focusing on cancer screening quality assurance and population health management. Working with public participants, we co-designed materials and tested them through deliberative workshops, focus groups, and a large-scale survey. The research examined whether these materials could set accurate expectations about the aspects of data use people said mattered most: why it is accessed, who uses it, how it is used, and what safeguards protect it. The findings show that well-designed materials can successfully inform people and set accurate expectations, even for complex uses of data. Most participants understood the materials and felt reassured by the safeguards described. However, the research found that many did not want to read detailed information on how the NHS uses. The research found that provision of effective and timely NHS services is a more important factor in building trust that data is being used appropriately than transparency alone.

The panel discussed how these findings could shape future work on transparency, communication, and legal frameworks that apply to the use of health and care information. The ONDG team will work with SQAS and local PHM colleagues regarding the implementation of the research findings.

6. Any other business

No further points were raised.