Council Meeting
19 October 2022
Present
Dr Arjun Dhillon (Chair), Carey Bloomer, Prof Martin Crook, Helen Dyer, Dr George Fernie, Christopher Fincken, Andrew Harvey, Mr Adrian Marchbank, David Riley
Guests
Dr Claire Bloomfield (NHS Transformation Directorate), Rebecca Cosgriff (NHS Transformation Directorate)
Observers
Ryan Avison, Dr Helen Bauckham, Dr Neil Bhatia, Neil Clarke, Dr Erum Nomani, Sophie Reed, Debbie Topping
Apologies
Dr Chris Bunch (Vice-Chair), Dr Faouzi Alam, Gill Bennett, Dr Alexandre Crowe, Mr Rhidian Hurle, Professor Roy McClelland, Alison Newell, Dr Matt Noble, Dr Cait Taylor, Brigadier Duncan Wilson
Declarations of interest
Can be found on the register of interests. No other new interests were declared.
Action log
The action log was reviewed. Two actions remain open and ongoing, with an update provided by the Chair on progress. All other actions were agreed as completed.
Chair and Vice Chair’s report
The Chair updated Council on recent activities and meetings they have attended, including:
A roundtable is being planned to discuss the legal basis for sharing GP records with medical examiners. Following this, Council will need to consider how best to disseminate any resulting advice and guidance.
The Chair wrote to the Accelerating Access to GP Records programme following their attendance at the previous council meeting on 16 August 2022.
The UKCGC newsletter is ready to be published. The November workshop, led by David Riley, will be promoted in it.
The Council was made aware of companies that had approached GP practices to identify potential patients for medical research. The Chair is leading discussions to consider whether action is needed from UKCGC.
The UKCGC continues to speak with NHS England (NHSE) about how it can best support Caldicott Guardians on Integrated Care Boards (ICBs) through NHSE’s new ICB IG forum.
Dr Helen Bauckham was introduced, who joined the Office of the National Data Guardian (ONDG) last month as a project manager.
Dr Chris Bunch has stated he intends to step down as UKCGC Vice Chair. This role will be advertised, and a new vice chair appointed.
Requests for advice to Council
Council discussed recent requests for advice. The Chair noted that most requests had already been covered in the Chair’s report. One request of note concerned specific advice for Caldicott Guardians on ICBs, which was considered and discussed by Council.
Update on Progress with the Trusted Research Environments (TREs) / Secure Data Environments (SDEs) Programme
Dr Claire Bloomfield and Rebecca Cosgriff (NHS Transformation Directorate) attended to update Council on the Trusted Research Environments (TREs) / Secure Data Environments (SDEs) Programme. Dr Bloomfield originally presented the broad remits of the programme at a council meeting on 9 February 2022. She returned to provide a further update on 22 June 2022.
The presentation focussed on programme updates and provided an outline of the mandate for change (including the Department of Health’s data strategy (Data Saves Lives) and the Goldacre Review). The programme team discussed its core objectives and then the floor was opened to Council for questions. Dr Bloomfield asked Council for recommendations on how to gain approval for this work, with the current proposed model including a Research Ethics Committee (REC) and section 251 approval from the Health Research Authority’s Confidentiality Advisory Group (CAG).
The Council was concerned about the complexity of the programme and the presence of multiple themes. Council members raised the information governance aspects and asked how the Caldicott Principles were integrated into this work. Given this debate, the Chair subsequently suggested an additional meeting to discuss how the UKCGC can work with and support Dr Bloomfield to get this right.
Further conversations focussed on the programme’s ability to balance three aspects:
1. Adding value to the NHS.
2. Benefits for health and social care.
3. Considering public best interest.
Council thanked the guests for their update and offered them further support and engagement.
Actionable points:
1. Invite Dr Bloomfield back to Council to give a detailed presentation of the programme and key updates.
2. Council members to volunteer to consult with Dr Bloomfield as an ongoing process as she delivers this programme.
UKCGC Priorities
Ryan Avison (UKCGC Secretariat and Head of the Office of the National Data Guardian) initiated a discussion regarding Council priorities and strategic objectives.
Council discussed the importance of having this UK-wide body and deliberated the roles and responsibilities of Caldicott Guardians. Current training for Caldicott Guardians was generally praised. However, further work needs to be done to increase accessibility and standardisation and give guidance on expectations for refresher courses.
Council felt that training and awareness of the role of Caldicott Guardians need to be extended to an organisational level. There are concerns that some organisations are not aware of the important role that Caldicott Guardians play. Council suggested the introduction of descriptions of Caldicott Guardians to high-level organisational policy.
Council preferred a permissive approach (to allow greater freedom and flexibility) to the Caldicott Guardian description over a descriptive approach, due to the variance in roles of Caldicott Guardians across organisations. Members agreed that all descriptions (regardless of the type of organisation) should share some standard information, such as the responsibility of Caldicott Guardians to deliver safe services, comply with the law and respect privacy and confidentiality.
Council discussed concerns that social care is not always considered in discussions and documentation for Caldicott Guardians. Recommendations were made to include supplementary materials in the Caldicott Guardian manual, with specific guidance relating to Caldicott Guardians in social care.
The Chair discussed the potential planning of a UKCGC conference. The Council was interested and favoured a hybrid or virtual event. The Chair will speak with the Office of the National Data Guardian to explore feasibility.
Actionable points:
1. Update the Caldicott Guardian manual.
2. Regular updates of the manual are required to include new policy and guidance.
3. Organise a focus group to consider Caldicott Guardian training and standards (including refresher training and increased accessibility of training materials).
4. Consider incorporating separate, more specific advice for social care providers and smaller organisations, with the possibility of linked Caldicott Guardians overseeing multiple small organisations
5. Survey question to be included in a UKCGC newsletter, to ask Caldicott Guardians what they want to hear from Council (also to ask the type of organisation each Caldicott Guardian is based at, to ensure a representative sample)
Other Business
No other business.
Next meeting and workshop
The next meeting will be held virtually on Tuesday 6 December 2022.
The next UKCGC workshop will be held virtually on Tuesday 2 November 2022 from 3:30-5:30pm.