Transparency data

Minutes of the National Data Guardian Panel Meeting, 9 July 2024

Updated 14 October 2024

Applies to England

Attendees

Panel members

• Dr Nicola Byrne (chair)
• Dr Natalie Banner
• John Carvel
• Dr Arjun Dhillon
• Dr Edward Dove
• Dame Moira Gibb
• Dr Fiona Head
• Mr Adrian Marchbank
• Maisie McKenzie
• Dr Jess Morley
• Professor Daniel Ray
• Rob Shaw
• Jenny Westaway
• Professor James Wilson

Office of the National Data Guardian team

• Ryan Avison
• Dr Vicky Chico
• Layla Heyes
• Karen Swift

Observer

• Dr George Fernie – Vice-chair UKCGC

1. Welcome, apologies, and declarations of interest

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

• The NDG read out a thank you note from Professor Ian Craddock. This would have been Ian’s final panel meeting but he had to send his apologies. The NDG confirmed that she has thanked him for the invaluable support and guidance he provided during his time on the NDG’s panel.
• Dr George Fernie, Vice-chair of the UK Caldicott Guadian Council, attended as an observer.

• Panel member Dr Arjun Dhillon (an NHS England employee) declared a conflict of interest on the recent cyber-attack item. Dr Dhillon sits on the National Incident Management Team for the Synnovis incident. The chair and panel agreed that Dr Dhillon could provide factual clarifications on the item if required.

• There were no other conflicts declared.

2. New NDG panel member welcomes

Dr Jessica Morley, Yale Digital Ethics Centre, Yale University, and Professor Daniel Ray, Chief Technology Officer and Data Protection Officer for Birmingham Women’s and Children’s NHS Foundation Trust, have joined the NDG’s Panel. Jess and Daniel introduced themselves and provided a brief background of their careers and their interest in the NDG’s work.

3. Minutes from previous meeting, actions, and decisions

Panel members accepted the minutes from its 12 March 2024 meeting.

Ryan Avison, Head of the Office of the National Data Guardian (ONDG), gave an update on one open action. All other actions were agreed as having been completed before this meeting.

4. Key updates

Ryan Avison led the key updates, summarising key ONDG activities since the last panel. Other ONDG members also contributed.

4.1 Engagement with Wes Streeting, new Secretary of State for Health and Social Care

Following his recent appointment, the NDG intends to write to the Rt Hon. Wes Streeting, the new Secretary of State for Health and Social Care.

4.2 Cyber-attack on pathology service provider Synnovis on 3 June 2024 

NHS England and the Department of Health and Social Care are regularly updating the NDG on this incident. She noted that she has had some personal experience of its impact through her clinical role in an affected organisation in South London. She discussed the challenges the incident had created for clinical care. As such, she is keen to play a role in helping the system learn from this incident, including exploring how organisational preparedness (in terms of operational resilience across systems) might be improved for any future incidents that impact the availability of data required either directly or indirectly for the provision of health and care. 

4.3 NDG policy position on reflective practice as integral to safe direct care

Dr Vicky Chico, Senior Privacy Specialist in the Office of the NDG, updated panel on the development of the NDG position statement that outlines why, where necessary, access to confidential patient information by registered health and care professionals for the purposes of reflective practice by registered health and care professionals is integral to delivering safe direct care. The ONDG has engaged with health and care regulators to ensure the paper reflects each regulator’s professional requirements and guidance on reflective practice.

To gain some understanding of the views of members of the public, the ONDG commissioned polling of 2558 adults in the UK aged over 16. The sample was weighted to represent the 16+ adult population of the UK. People were asked whether they agreed or disagreed with the position that ‘during reflective practice, healthcare professionals should be given access to information about how their care impacted patients so they can assess what worked well and what they may need to improve in the future.’ Of the people polled, 97% were in the net top 3 strongly agree, agree, somewhat agree and 3 % were in the net bottom 3 strongly disagree, disagree, somewhat disagree.

The ONDG is meeting with the Health Research Authority’s Confidentiality Advisory Group (CAG) to discuss this policy change and the position that reflective practice should be possible for registered healthcare professionals within the boundaries described in the paper on the basis of implied consent for direct care. The ONDG will then work with stakeholders to determine how to best communicate the policy change to the system and the people it affects.

5a. NDG’s Vision, Mission, and Strategic Objectives

Following the NDG’s reappointment for a second three-year term, the ONDG is seeking to refresh the NDG’s vision, mission, strategic objectives and work priorities. This will enable the office to plan internally for the remainder of her term and focus its resources on critical areas with the most impact. Externally, it is hoped this will allow us to articulate better the activities we think are key to securing public trust in data and ensuring that data is used appropriately to benefit the public.

Panel members discussed the key themes from the paper and made several observations. They suggested helpful changes to improve and strengthen the proposal and highlighted some critical areas that needed further consideration.

The NDG stated that she would consider the panel’s comments and, where appropriate, update the paper to reflect people’s feedback.

5b. NDG’s priority setting and outcomes/impact measures

It was explained that the NDG will set yearly work priorities to help her make the most impact against her strategic objectives. Where the ONDG commits to a significant piece of work, they will likely be unable to complete it in one year. Therefore, some work will carry over into her term’s second or third year.

Noting previous helpful challenge from some panel members on the question of demonstrating impact, the NDG wanted as part of this discussion to consider whether it might be possible, and helpful, to identify any specific outcome measures to better evidence the difference made by (and thereby value to the public of) the NDG, her panel, and the UK Caldicott Guardian Council (UKCGC) over the rest of her term.

The panel believed that because the NDG’s work is advisory in nature, using specific quantifiable outcome measures in relation to the strategic objectives was unlikely to be feasible. This approach risks being misleading due to the complexity of the landscape, where multiple factors are frequently at play beyond the NDG’s control or influence. However, the panel were encouraging regarding the use of more qualitative evidence in future (for example, impact statements from organisations the NDG has supported or advised), which could be incorporated into future annual reports.

The NDG welcomed the panel’s comments and recommendations.

6. Any other business

No further points were raised.