Meeting minutes - November 2022

Date: 2 November 2022

Time: 14:30 - 16:00

Venue: MS Teams

Chair: Louise Greenrod (Deputy Director - Data Policy and Digital Oversight, Joint Digital Policy Unit)

Dr Nicola Byrne (National Data Guardian for Health and Care)

Chris Carrigan (Expert Data Adviser, Use MY Data)

Matt Hennessy (Regional system representative, Greater Manchester Health and Social Care Partnership)

Louis Holmes (Policy Manager, Care England)

Philippa Lynch (Senior Data Specialist, Local Government Association)

Nicola Perrin (Chief Executive, Association of Medical Research Charities)

Linn Philips (NHS patient and public voice partner)

Shivani Shah (Head of Programmes, Patient’s Association - Deputy for Rachel Power)

Deputy Head of Communications (NHS Transformation Directorate)

Head of Data Strategy (Joint Digital Policy Unit)

Head of Digital Oversight (Joint Digital Policy Unit)

Policy Advisor (Data Strategy Team, Joint Digital Policy Unit)

Policy Advisor (Data Strategy Team, Joint Digital Policy Unit)

Senior Policy Advisor (Data Strategy Team, Joint Digital Policy Unit)

Senior Policy Advisor (Data Policy Team, Joint Digital Policy Unit)

Apologies

Marc Farr (Regional system representative, East Kent Hospitals University NHS Foundation Trust)

Mavis Machirori (Senior Researcher, Ada Lovelace Institute)

Rachel Power (Chief Executive, Patient’s Association)

Helen Stokes-Lampard (Chair, Academy of Medical Royal Colleges)

Michelle Thompson (NHS patient and public voice partner)

Actions

2.01: Commitment delivery update. Discuss with commitment owners whether more granularity to ratings for commitments is available, in particular SDE delivery (Data Strategy Team)

2.02: Next commitment delivery update to include cover note to bring attention to those commitments where want groups input, as well as a more detailed RAG rating (Data Strategy Team)

2.03: Questions on specific commitment areas:

Check with commitment owners who the audience for the ‘fit-for-purpose rules around different types of data’ commitment will be.

Return to group with outcome of discussions regarding how to improve issue of sequencing of work ongoing in the IG space being at odds with policy announcements (Data Strategy Team)

2.04: Share draft regulations for transition of functions of NHSD to NHSE with group, for information (Head of Digital Oversight)

2.05: Arrange discussion with the group about how best to deliver commitment to monitor public trust, including further consideration around the role of proactive comms (Data Strategy Team/Head of Communications)

2.06: Share information on existing PR campaign with the group (Head of Communications)

2.07: Arrange discussion in future meeting about planned communications research programme (Head of Communications)

2.08: Link with Patients Association on University of Manchester research into acceptable data sharing (Head of Communications)

2.09: Arrange a specific discussion on how to reassure people about current/future uses of the FDP, with further information / feedback from FDP colleagues to come. [spec. Confirm detail on FDP use cases and responses to questions from meeting] (Data Strategy Team)

2.10: Arrange discussion on governance of data strategy (Data Strategy Team)

Item 1: Welcome and introductions

Louise Greenrod (LG) opened the meeting, introduced herself as the new chair, and welcomed attendees.

Item 2: Actions and Wider update

The action log was shared prior to the meeting. There were no comments.

Item 3: Summary of the data strategy and its implementation governance

A paper was shared prior to the meeting outlining key commitments most relevant to the NDAG, ordered by deadline.

The Head of Data Strategy presented – explaining that most commitments were either on track or had small changes to deadline or other points of detail. The group discussed those that were red-rated, and the mitigations in place. Members also provided feedback on the format of this update, and how it could be improved for future meetings.

Action 2.01: Consider breaking down commitments with lots of sub-elements into separate elements, to provide more granularity (SDE commitment an example)

Action 2.02: For the next meeting, the team will provide a short cover note, highlight key areas for discussion. The team will also work towards a more nuanced way of RAG rating commitments – focused on whether or not they are off track, as well as the risk inherent in each (seriousness of risk, likelihood).

Action 2.03: Questions on specific areas:

- For the commitment to define pseudonymisation, check with policy team who will be the audiences for the guidance.

- Members provided feedback that IG and other guidance can be at odds with requests from Government / those working at national level. Team to feed this back to relevant colleagues in the Joint Unit.

Item 4: Merger of NHS Digital with NHS England – update

The Head of Digital Oversight presented – providing an update on the transferring of functions of NHS Digital to NHS England and highlighting that the initial timeline has been accelerated so that, legislation permitting, it will be delivered at the start of 2023.

The group discussed the importance of ensuring sufficient recognition for ASC and enabling local authorities to access health data in the new arrangements.

Action 2.04: – Head of Digital Oversight to share draft regulations with group, for information

Item 5: Data Protection and Digital Information Bill: Impact on the data strategy

Senior Policy Advisor (Data Policy Team)’s presentation on the information standards clause in upcoming DCMS bill disrupted due to technical issues. Slides to be shared and will follow up any questions outside of meeting.

Item 6: Data Pact – Update

Senior Policy Advisor (Data Strategy Team) presented - explaining that, as a result of feedback received from the NDG, we are now in the process of arranging focus groups with the public to gather information on the best language to use and what content the public expect to see in the data pact. The group discussed the timeframes for delivery [estimated summer 2023] and current thinking about ‘key themes’ for the content of the pact.

The group were asked to provide further, future, input to the design of the focus groups.

Item 7: Public Perceptions of Health and Care Data

Policy Advisor (Data Strategy Team) presented – providing the group with an overview of what we already know in terms of public perceptions of health and care data, highlighting the commitment within data strategy – “We will agree, with the expert group, how we will transparently measure and monitor levels and drivers of public trust so that all organisations using health and care data have up to date information about the public’s attitudes to data use.”

The group discussed this commitment and public trust more broadly, commenting that there is a need to understand trust in data among specific population groups and in specific contexts, so that we can have tailored conversations – both individually and regionally. The group felt that there was a need to move towards being clearer about ‘trust in what’. Additionally, the importance of working openly and having proactive, positive communications strategies were highlighted.

The group suggested that there were missed opportunities to work more closely with the regions and to have a more ‘joined up’ approach to communications, as well as suggesting the possibility to include a voluntary question in the National Data Opt-Out to ask why people are opting out.

Action 2.05: Return to the group to discuss how best to deliver this commitment, including further consideration around the role of proactive comms.

Deputy Head of Communications presented - updating on the planned communications public confidence campaign and research being commissioned to inform our comms/engagement approach going forward- this will look to consider different demographic groups and tailor approaches to them. Additionally highlighted current work to develop a cohesive narrative around data programmes.

Action 2.06: Deputy Head of Communications to share information on existing PR campaign with the group

Action 2.07: Deputy Head of Communications to provide more information about research programme

Head of Programmes of Patients Association highlighted work ongoing with the University of Manchester looking at acceptable data sharing and reasons for opting out, which could be beneficial to link with.

Action 2.08: Deputy Head of Communications to link with Patients Association on this research

Item 8: Federated Data Platform

Presenter unable to attend.

The Deputy Head of Communications gave brief update – explaining that we are in the final clearances to issue the contract notice for the FDP, which would include all technical specifications for what we are looking to procure, and that information will also be published on the NHSE website.

The group asked for clarity over who the FDP users will be and the FDP communication strategy – specifically how we intend to reassure people about the potential future scope of the FDP. The group discussed the need for a clear communications message and the importance of governance and transparency in order to build confidence in the system.

Action 2.09: arrange a specific discussion on how to reassure people about current/future uses of the FDP, with further information / feedback from FDP colleagues to come. [spec. Confirm detail on FDP use cases and responses to questions from meeting]

Item 9: AOB and CLOSE

The group asked for further information on governance of data strategy There was a discussion around work ongoing to rationalise engagement fora and PPEI, as well as governance processes.

Action 2.10: come back to group with further information on governance of data strategy

Policy Advisor (Data Strategy Team) raised ‘Evaluation of the Data Strategy’ as an AOB, explaining that the Data Strategy team are working to produce a proposal for the evaluation of the data strategy, with the aim to assess success of strategy in terms of achieving intended impacts, and that we would value feedback on this work from this group.

The next meeting would take place on 15th December.

Slides and minutes will be circulated.