Meeting minutes - September 2023

Date: 5 September 2023

Time: 10:00 - 11:30

Venue: MS Teams

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

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

Chris Carrigan (Expert Data Adviser, Use MY Data)

Matt Hennessey (Regional System representative, Greater Manchester Health 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)

Rachel Power (Chief Executive, Patient’s Association)

Apologies

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

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

Actions

9.01: Members to share any further feedback on next steps for NDAG, and any potential items for future meetings. (Members)

9.02: NHS England colleagues to share communications on the FDP with NDAG members for advice. (FDP Team)

9.03: Item on FDP and potential uses for adult social care to be discussed at future NDAG meeting. (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 regarding previous actions.

LG noted the recent FOI request for the minutes of this Group and the Department’s intention to release them (subject to minor redactions of names). She also explained that it had always been the intention to publish the Group’s minutes and this would be done in the future, with members agreeing the minutes at the start of the following meeting, prior to publication. No concerns were raised by members about this approach.

Item 3: Reflections on the first year of NDAG 

LG introduced this item and summarised the feedback received so far from conversations with members. She added that the Data Strategy team were happy to have further individual conversations with members.

In response, members:

• were supportive of the idea of longer meetings to discuss complex issues, but asked that thought be given to ensuring the right attendees for the topic to be discussed and to whether additional people should be invited for these discussions.
• asked for more clarity on whether they were attending each meeting as a subject matter expert, or as a representative of a particular group (the latter requiring more time ahead of a meeting to consider the issue and gather views from others).
• noted that the objective of the Data Strategy was to improve data use in the system and the value of hearing from the system how things were improving on the ground.
• felt that it was important to discuss what had gone well and less well with Data Strategy implementation, and identify lessons learned.

LG concluded the item by asking members for any further feedback, particularly on topics they felt it would be helpful for the group to discuss.

Action 9.01: Members to share any further feedback on next steps for NDAG, and any potential items to discuss at future meetings.

Item 4: Federated Data Platform update

Dr Vin Diwakar (National Director for Transformation), Ayub Bhayat (Director of Data Services), the Head of Communications and Engagement for FDP, the Head of Information Governance for FDP and the Head of Data Policy attended for this item.

Vin Diwakar (VD) provided a short update on the FDP procurement process, which was still underway. Bidders would be notified of the outcome of the FDP, followed by a ten-day standstill period, then a public announcement. The NHSE team were very aware of the concerns around privacy and how data would be used in the FDP, and this had been considered as part of plans for launch. Communications would be clinically-led, focus on benefits of an FDP for patients and provide reassurances about how data would be kept secure. He stressed that the supplier of the federated data platform will only operate under the instruction of the NHS when processing data on the platform. The supplier will not control the data in the platform, nor will they permitted to access, use or share it for their own purposes. He finished by explaining how the FDP represented a strategic step forward in enabling the more coordinated use of data in the NHS to deliver benefits for patients.

Ayub Bharat (AB) set out the five use cases for the FDP. He explained that data would be protected by privacy enhancing technologies, supplied by a different supplier to that providing the FDP and Associated Services: these were subject to a separate, parallel, procurement.

It was noted that the previous meeting had asked how the National Data Opt Out (NDOO) applied to the FDP. The Head of Data Policy explained that in any case where the FDP was using confidential patient information for secondary purposes such as planning, then the NDOO would apply, as per existing policy. However, on current plans the FDP would not be used to process identifiable data for purposes other than the individual care of patients. The team would keep information under review as uptake of the FDP increased, particularly by ICSs. It was felt important to correct misconceptions that opting out would stop personal data being included in the platform but the importance of increasing people’s confidence in how their data would be used within the FDP was agreed as equally important.

The Head of Information Governance added the programme had been working with critical friends from across the NHS to develop IG materials and this would include clear information on the opt out.

In discussion, members:

• asked for greater clarity and specificity in communications about the use cases and whether the opt out applied in each use case or not;
• proposed that FDP communications should clearly rebut negative messages, alongside focusing on the positive case for the platform (although the possibility of availability bias - where centring communication on negative messages risks highlighting those very negatives in people’s minds – was noted);
• suggested that the programme should draw on the power of internal advocates within the NHS, learning from the success of campaigns to support Covid vaccinations, with simple messages that staff could disseminate; and
• proposed that the expertise and experience of NDAG should be used to actively contribute views on the development of plans and materials;
• asked whether local authorities would have access to the FDP for adult social care and public health purposes. AB confirmed that initially, a view had been created for local authorities to view discharge information. The programme was working with DHSC to see how the FDP could be used to support adult social care more broadly. Members noted that care pathways into adult social care were broader than discharge and they were keen to be involved in further discussions on this point.

In conclusion, AB noted the detailed communications planning underway and that the programme would welcome NDAG members advice and guidance on this and on communications materials themselves.

Action 9.02: NHS England colleagues to share communications on the FDP with NDAG members for advice.

Action 9.03: Item on FDP and potential uses for adult social care to be discussed at future NDAG meeting.

Item 5: Data Strategy: Commitment Delivery Update

LG asked if there were any questions on the update shared ahead of the meeting. There were none.

Item 6: AOB and CLOSE

LG mentioned the primary care data sprint being led by DHSC, focused on consented data sharing for research, that some members had been involved with. The team that led these were working through the inputs received and there would be further discussions. If members were interested in participating, they should email LG.

LG also thanked the Patients Association for their work on the Data Pact focus groups. The report and a response would be published later this month.

LG finished by noting plans to trial changes for future meetings from October and to agree any other changes to NDAG at that meeting, following any further feedback received from members.

The next meeting was scheduled for Thursday 19th October at 14:30-15:30.