Council Meeting

15 May 2025 

Present  

Council members in attendance

George Fernie (Chair), Alison Metcalf on behalf of Allison Newell, Helen Dyer (Vice Chair), Jason

Smith, Martin Crook, David Riley, Erum Nomani, Adrian Marchbank, Arjun Dhillon (until approx. 1450), Matt Noble, Neil Bhatia

Guests

Duncan Routledge, Kathryn Scully, Iain Turnbull

Observers

Lampraki Athanasios, DWP Policy Group Disability and Health Support Directorate. Sophie Reed,

Milestones Trust. Raz Edwards, SIGN.

Apologies

Allison Newell, Deborah Topping (observer), Jonathon Osborn.

Secretariat

In the absence of secretariat support, it was agreed that Teams would transcribe the meeting to aid Helen Dyer in taking notes and contributing to the meeting. It was determined that the transcription would be deleted one week after the notes were completed.

Declarations

Dr Arjun Dhillon declared a potential conflict arising from his role as Deputy Caldicott Guardian for NHS England, and therefore providing data to our Future Health. Dr Dhillon left the meeting before the scheduled agenda item.

No other declarations were made.

1. Actions

Council reviewed the notes of the 26 March 2025 Council meeting and accepted them as an accurate record.

The UKCGC Chair and Council members reviewed the action log. The Chair provided an update on the open actions.

2. Chairman’s update

The Chair provided a summary of meetings of note attended since the last Council meeting, for the benefit of members, including engagement with the National Data Guardian (NDG), the Digital Care Hub Team, and an overview of items raised at recent Breakfast Clubs, as well as preparations for the forthcoming Annual UKCGC Conference.

There has been significant activity relating to UKCGC feedback to NHSE draft guidance through their check and challenge process. All contributors are recognised and thanked for their input.

Advanced notice was offered that a draft guidance document relating to strangulation, particularly concerning information sharing and coercive control, will be circulated for comment and feedback.

Members were asked to review their role profiles for accuracy and update pictures as efforts to improve website relevance and accuracy continue. Thanks to all involved with this.

Members were asked to support the Council with podcast or video expertise to help facilitate the development of new online learning resources.

Council agreed to the suggestions proposed in relation to legal professional attendance at meetings.

Registration of UKCGC with the ICO for 2025/6 is confirmed as complete.

3. Vice-chair’s update

The Vice Chair provided an update on the Breakfast Club, which has seen an increase in member numbers since the recent newsletter.

A proposal for a workshop on AI and the Caldicott Principles was reviewed, agreed upon, and further comments were invited. Arjun Dhillon offered to share a piece of his work relating to ethical principles in the use of AI in Health and Care.

Council agreed to the closure of the locked DHN UKCGC forum, with retention of the forum for all Caldicott Guardians

4. Infected Blood Compensation Authority (IBCA)

Duncan Routledge (Head of Data Governance and Strategy) and Kathryn Scully (Data Protection Officer) presented a summary of the Infected Blood Compensation Authority's purpose and progress, their Information Acquisition Power afforded by the Victims and Prisoners Act 2024 and IBCA’s Data Governance model and roles.

Areas of discussion included:

  • The scope of IBCA’s role and purpose

  • Application of Caldicott Principle 3

  • Potential conflicts of interest between SIRO and CG roles

  • Acknowledgement of the progress made

  • How UKCGC may be able to support whilst upholding trust and confidence

  • Expected NHSE guidance about information sharing.

  • Developments and information sharing related to affected (not infected) people

  • Consent, permission, balance of power, transparency and the Common-law duty of Confidence, including after death.

5. Our Future Health (OFH)

Presentation from Dr Iain Turnbull, CEO, Deputy CMO, Senior Clinical Adviser and Caldicott Guardian for Our Future Health, which offered a brief overview of OFH processes, progress in recruitment numbers and diversity, data linkages and data sharing approach.

Discussion included:

  • Questions related to the role of the Caldicott Guardian with OFH

  • Avoiding bias from a self-selecting cohort

  • Feedback and recontact from the perspective of an ethical dilemma, e.g. poor prognosis

  • Business continuity for data governance in the event of OFH's demise

  • How UKCGC might be able to offer support

6. Check and Challenge Process

This proposal was agreed for implementation on an iterative basis.

7. UKCGC Caldicott Guardian Consultation

Views were received from those present about the proposed questionnaire and methodology. The project was agreed upon, and suggestions were made relating to questions to be asked.

8. Other Business

None raised.

9. Next meeting

The next meeting will be held virtually on July 22, 2025, from 13:00 to 16:00.