Council Meeting
20 March 2024
Present
Dr Arjun Dhillon (Chair), Dr George Fernie (Vice-Chair), Dr Faouzi Alam, Dr Neil Bhatia, Dr Chris Bunch, Prof Martin Crook, Helen Dyer, Christopher Fincken, Mr Adrian Marchbank, Dr Matt Noble, Dr Erum Nomani, David Riley
Guests
Sam Smith (medConfidential), Ben Goldacre (OpenSAFELY), Amir Mehrkar (OpenSAFELY)
Observers
Raz Edwards, Colin Harper, Jonathan Osborn, Sophie Reed, Debbie Topping
Secretariat
Ryan Avison, Helen Bauckham
Apologies
Carey Bloomer, Rhidian Hurle
Declarations of interest
Can be found on register of interests. No other new interests were declared.
Notes of previous meeting and matters arising
Council reviewed the notes of the 23 January 2024 Council meeting and accepted them as an accurate record. There were no matters arising.
Action log
The UKCGC Chair and Council members reviewed the action log. An update was provided by the Chair on the four open actions.
Chair and Vice Chair’s report
Caldicott Guardian Conference: The Caldicott Guardian annual conference is taking place on Tuesday 21 May 2024. UKCGC are working together with HC-UK to develop an exciting programme. The Chair thanked all Council members who have agreed to present at the conference.
UKCGC Bulletin: the UKCGC bulletin was distributed on 07 Feb 2024. The bulletin included information on upcoming UKCGC events, including breakfast clubs, evening classes and the CG conference. You can view the newsletter here.
Breakfast Clubs: The next breakfast club is on next Wednesday, 27 March 2024.
Evening Classes: Helen Dyer is running a series of evening classes for Caldicott Guardians. The next evening class is on Wednesday, 3 April 2024 17:30 - 18:30 discussing “In the heat of the moment: a problem-solving approach for Caldicott Guardians”
Vice-chair attended NDG Panel: the UKCGC Vice-Chair attended the NDG Panel meeting on 12 March 2024. Topics included:
Data Security and Protection Toolkit (DSPT) and Cyber Assessment Framework
National Data Opt-Out (NDOO) reform
Requests for advice to Council
Council discussed recent requests for advice. The Chair noted that requests were mostly routine questions where the secretariat signposted inquirers to the relevant guidance.
Updates from medConfidential
Sam Smith from medConfidential attended the Council meeting to provide updates from medConfidential. medConfidential campaigns for confidentiality and consent in health and social care and seeks to ensure that every flow of personal data across and around the NHS and wider care system is consensual, safe, and transparent.
Sam presented a thought-provoking overview and updates from medConfidential, outlining his current areas of concern around confidentiality in health and social care and highlighting potential areas for improvement.
Council members acknowledged the importance of considering how Caldicott Guardians can help assure patients and the public that appropriate guardrails are in place around purpose and justification for flows of confidential patient information in the NHS and wider care system, in line with the Caldicott Principles.
Council members thanked Sam for attending Council and offered to continue engaging with medConfidential.
OpenSAFELY
Ben Goldacre (OpenSAFELY Principal Investigator and Director at the Bennett Institute for Applied Data Science) and Amir Mehrkar (OpenSAFELY head of information governance) attended Council to discuss the OpenSAFELY platform.
OpenSAFELY is a software platform developed through a consortium comprising the University of Oxford, with support from NHS England. OpenSAFELY was established at the onset of the Covid pandemic, specifically tailored for pandemic-related research. The platform uses de-identified (pseudonymised) patient data extracted from GP patient records within a trusted research environment (TRE).
Ben explained to Council how OpenSAFELY works, and discussed the core principles of the programme which include enhancing privacy, transparency, trust, reproducibility, and federated analytics for health data. The OpenSAFELY framework is designed to empower researchers to conduct analyses on the data without the data leaving the platform. The activity on the platform is all publicly logged. Ben highlighted some of the challenges faced by the programme, such as complex information governance systems and establishing user trustworthiness.
Council members asked Ben and Amir for clarity on how the OpenSAFELY platform provides transparency and data privacy assurances, and asked for more information on how the national data opt out applies to the programme. Council members raised concerns regarding re-identification risks, particularly with GP data, prompting discussions on the platform's protections to mitigate such risks.
During these discussions with the OpenSAFELY team, transparency and communications with patients and professionals emerged as essential themes for the platform's ongoing success. The UKCGC Vice-Chair thanked Ben and Amir for attending, and invited them to return to a future UKCGC meeting.
Other Business
No other business.
Next meeting
The next meeting will be held virtually on 23 May 2024 from 13:00-16:30pm.