Meeting minutes - October 2023

Date: 19 October 2023

Time: 14:30 - 15:30

Venue: MS Teams

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

Helen Bauckham (Deputising for Dr Nicola Byrne, National Data Guardian for Health and Social care)

Chris Carrigan (Expert Data Adviser, Use MY Data)

Dr Jeannette Dickson (Chair, Academy of Medical Royal Colleges)

Matt Hennessey (Regional system representative, NHS Greater Manchester)

Louis Holmes (Policy Manager, Care England)

Philippa Lynch (Senior Data Specialist, Local Government Association)

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

Rachel Power (Chief Executive, Patient’s Association)

Head of Data Strategy (Joint Digital Policy Unit)

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

Head of Communications for GP Data (NHS England)

Apologies

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

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

Actions

10.01: Link to minutes to be circulated once published (Data Strategy Team)

10.02: Update to NDAG on plans to use feedback in the development of the FDP (FDP team & Data Strategy Team)

10.03: Circulate the revised Terms of Reference for the Group to members, for agreement (Data Strategy Team)

10.04: Canvas alternative dates for the next meeting and discuss planned agenda with members (Data Strategy Team)

Item 1: Welcome and introductions

Louise Greenrod (LG) opened the meeting and welcomed attendees.

Item 2: Actions and Wider update

The action log was shared prior to the meeting. There were no questions from the group.

The minutes of the previous meeting were agreed with no change, with the exception of a small update to Matt Hennessy’s affiliation (to NHS Greater Manchester). The minutes would be published in due course on the data strategy pages of the NHS Transformation Directorate website, and the link would be circulated to members.

Action 10:01: Link for minutes to be circulated to members once published.

LG provided an update on the Federated Data Platform (FDP) and confirmed that contract award was yet to be announced. She thanked members for their feedback on the public communications materials and noted that updated information had now been published, and a feedback portal for the public was in development. Feedback from NDAG members would still very much be welcomed as further materials were developed. The Group asked how feedback gathered by the portal would be used, and it was agreed to provide an update on these plans to the group.

Action 10.02: An update on plans to use feedback gathered through the FDP portal to be provided to NDAG.

Item 3: NDAG Refresh

The Head of Data Strategy, talked through the paper, setting out proposals for how the Group should be developed in year two. The paper focused on six main areas:

1. Creating more time for strategic discussion
2. Ensuring feedback is constructive and actionable
3. Helping members to get to know each other
4. Hearing a more diverse range of voices
5. Creating a public profile for the group
6. Renaming the Group to avoid confusion with the newly established Advisory Group on Data in NHS England.

Members agreed the proposals, making the following additional suggestions:

• We should consider what type of patient or public voice input would be most helpful.
• There was support for additional provider representation on the Group, particularly from primary care. A representative from the Professional Record Standards Body was one suggestion.
• Members felt the proposed new name for the Group (Data Policy Advisory Group) risked confusion with other similarly named groups in this area, and that the use of the term ‘policy’ did not represent the breadth of the Group’s work. The team agreed to consider alternatives.

The Data Strategy Team agreed to share a revised term of reference and a further proposal for the name of the group, ahead of the next meeting, for agreement and to formalise the changes.

Action 10.03: Data Strategy Team to circulate revised terms of reference to NDAG members.

Item 4: Powered by NHS Data Campaign

The Head of Communications for GP Data provided a short update on the ‘Powered by NHS Data’ campaign, including statistics from the first ‘burst’ of three films and next steps for the next ‘burst’. She noted that the intention of this campaign was to make people aware in general terms of how their data might be used beyond direct care, and was not intended to support specific programmes or projects.

Members welcomed the update and discussed the following points:

• Whether there was a risk of the campaign raising expectations about use of data that were being unfulfilled. The Head of GP Communications explained information on expectations was not currently collected, and the uses presented in the videos were intentionally very separate to data uses for direct care.
• There was limited information available on the demographic details of people who viewed the videos, as the team were keen to limit the amount of tracking data collected. However, the social media posts were targeted at specific demographic criteria.
• A possible use case for the third video in the next ‘burst’. The Head of GP Communications explained they were considering a video based on a recent clinical trial of radiotherapy for breast and prostate cancer, but this was data sharing on the basis of consent whereas other videos featured other legal bases for data sharing. However, NDAG members were supportive of this use case as the basis of a third video.

Item 5: Data Strategy: Commitment Delivery Update

Senior Policy Advisor provided a short update on the latest month’s performance against the commitments in the data strategy. Members noted the update with no questions.

Item 6: AOB and CLOSE

LG ran through plans for the next meeting, which would be a longer, face to face meeting. It was noted that the proposed date coincided with the Health and Care Intelligence Congress; therefore it was agreed to explore alternative dates for the meeting. The Data Strategy Team would also be in touch to discuss the agenda, which would focus on public engagement including ways of getting some input directly from members.

LG also noted that the invitation to tender for large scale public engagement would be issued the following week. This was a limited exercise using an existing procurement framework.

Action 10.04: Data Strategy Team to explore alternative dates for the next meeting, and to discuss plans for the agenda with members.