Meeting minutes - November 2024

Date: 26 November 2024

Time: 10:30am - midday

Venue: Teams call

Chair: Louise Greenrod, Deputy Director - Data Policy

Dr Nicola Byrne (National Data Guardian)

Nicola Hamilton ( Head of Understanding Patient Data)

Matt Hennessey ( Chief Intelligence and Analytics Officer, NHS Greater Manchester)

Philippa Lynch (Senior Data Specialist, Local Government Association)

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

Head of Data Policy Team (Joint Digital Policy Unit)

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

Apologies

Chris Carrigan (Expert Data Advisor, Use MY Data)

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

Jacob Lant (Chief Executive, National Voices)

Rachel Power (Chief Executive, Patients Association)

Actions

15.01 - Secretariat to circulate minutes as soon as possible after each meeting.

15.02 - Item on spending review to be scheduled for discussion at the next meeting.

Item 1: Welcome and updates

Louise Greenrod (LG) welcomed people to the meeting.

LG provided updates on actions from previous meetings. There were 3 actions that were in progress.

LG asked if there were any comments on the draft minutes of the previous meeting (September 2024). There were comments. Members asked for the draft minutes of each meeting to be circulated as soon as possible after the meeting, to enable them to comment more effectively.

Action: Secretariat to share draft minutes with DSAP members as soon as possible after each meeting.

Item 2: Updates and Q&A

LG ran through a series of announcements that had been made since the last meeting in mid-September:

• Secretary of State gave a speech to the RCGP Annual Conference on 4 October, where he announced the move towards a single patient record, and addressing the issues around sharing GP records with consented cohort research studies.
• The 10 Year Plan engagement exercise was launched on 21 October, with details of the co-chairs of the vision and enabling working groups published shortly afterwards. There were two particularly relevant to this Group: the Technology and Data Working Group, co-chaired by Ming Tang and Tim Ferris, and the Life Sciences, Research and Innovation Working Group, co-chaired by Vin Diwakar and Lord Ara Darzi. The team was working closely with colleagues to ensure that our public deliberations and those for the 10 Year Plan were aligned.
• The Data (Use and Access) Bill was introduced to Parliament on 23 October. This included clauses on making information standards mandatory for IT suppliers to health and care systems, as had been included in the Data Protection and Digital Information Bill under the previous government.
• Professor Cathie Sudlow’s review of the health data landscape was published on 4 November. One of her key recommendations was to establish a national health data research service for England, and development work had begun, in collaboration with NHS England and the Department for Science, Innovation and Technology.
• The Department for Education published a command paper on 18 November, which included a proposal for a unique identifier for children to improve information sharing across agencies, in particular safeguarding children. A bill was planned (as announced in the King’s Speech), this was likely to include provisions to formally introduce this identifier, as well as a statutory duty allowing professionals to share information for children’s safeguarding and wellbeing.

Discussing these announcements, members mentioned the need to ensure that the Sudlow review’s recommendations be linked to the development of the 10 Year Plan, to avoid separate conversations. They were also concerned that approach was potentially too fragmented: there were many conversations about how to use the same data asset and these needed to be more joined up. Centring it around the patient could be helpful in enabling this.

The Group also discussed plans for improved linking of data across government, following confirmation in the autumn Budget that a National Data Library (NDL) would be created. Health data would be a part of the NDL, and this included how the NDL and the health data research service would interact. Members felt that there needed to be more consideration of governance and how to maintain public trust as more linking of public sector data was considered.

LG then spoke about preparing for the next spending review (SR) period, and the 3 central opportunities that needed to be surfaced in the SR (single patient record, FDP expansion and health data research service) as well as four cross-cutting foundations (legislative reform, technical infrastructure and data standardisation, professional and public trust, and governance of data flows). She asked for comments from members on this conceptualisation.

In response members:

• Agreed it was helpful to set out the opportunities and foundations in this way, but they felt the current description was too focused on solutions. Instead, it would be more helpful to focus on the underlying capabilities that needed to be delivered, so that solutions clearly flowed from the requirements identified.
• Framing capabilities/requirements around the person might be a helpful way of doing this.
• Felt that using data to look at specific care pathways (such as data registries and similar) was missing and could be helpful.
• Remained concerned about the possibility of silo working and asked if the newly constituted alpha design authority could be the place for discussions about how various programmes could be brought together to form a cohesive whole.

Finishing the discussion, LG committed to another discussion on the spending review and the objectives we wanted to achieve at a future meeting.

Action: Item on spending review to be scheduled for the next meeting.

Item 3: Opt-outs

The Policy Lead (Data Strategy Team) presented on the work to refresh the system of data opt outs, with a view to informing what was discussed in cohort 3 of the deliberations. They noted that ministers had agreed that the next cohort should focus on opt outs, but the detail was yet to be decided. Members were asked for their views on 3 questions:

1. Whether they agreed with the broad approach presented.
2. Whether local or use case-specific opt outs should be discussed in deliberations, and how to present these in relation to national opt outs.
3. Whether any other topics relating to opt outs should be included in the public deliberations.

In discussion, members made the following points:

• Previous cohorts had started with a problem statement and therefore it was important to be clear on what the problem statement should be for these discussions.
• It was important to remind people of their legal rights to request their data is not processed or shared (for example, in GDPR) so that the whole spectrum of removing your data from data sharing was presented. Participants should understand the current landscape of options in full, even if some could not be altered.
• The group discussed whether it would be better to alter the framing by presenting the benefits of data sharing and how expectations around improved services, better treatments and so on could only be achieved if people shared their data. It was important to be clear that sharing people’s data was necessary for a safe and sustainable health and care system and increasing opt out rates could be problematic. On the other hand, it could be confusing to be asking people to help design an opt out system that we thought was overused. An alternative was to frame the conversation around the different choices that existed.
• In terms of policy objectives, members agreed the existing system was confusing, and addressing inconsistencies was important.

In conclusion, LG asked members for any further comments on the paper circulated before the meeting to be sent to the Policy Lead (Data Strategy Team).

Action: Members to share any further comments on the opt out paper with Policy Lead.

Item 4: Any other business

There were no items of any other business. The next meeting would be in the new year although a date had not been set. Dates for 2025 meetings would be circulated in due course.