Meeting minutes - December 2023

Date: 8 December 2023

Time: 10:30 - 12:00

Venue: 39 Victoria Street and MS Teams

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

Chris Carrigan (Expert Data Adviser, Use MY Data)

Matt Hennessey (Regional system representative, NHS Greater Manchester)

Louis Holmes (Policy Manager, Care England)

Marie Horton (Senior Data Specialist, Local Government Association - Deputising for Phillippa Lynch)

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

Head of Data Strategy (Joint Digital Policy Unit)

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

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

Communications Manager (NHS Transformation Directorate)

Stakeholder and Public Engagement Lead (Data Access Team, Joint Digital Policy Unit)

Apologies

Dr Nicola Byrne (National Data Guardian)

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

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

Philippa Lynch (Senior Data Specialist, Local Government Association)

Rachel Power (Chief Executive, Patients Association)

Actions

11.01 Circulate new terms of reference for the Data Strategy Advisory Panel to members for their approval (Data Strategy Team)

11.02 Pending approval of the new terms of reference, name of group to be changed from National Data Advisory Group to Data Strategy Advisory Panel (Data Strategy Team)

11.03 Secretariat to arrange a demonstration of the Federated Data Platform for interested members (Data Strategy Team and FDP team)

11.04 Findings of NHS England research on public attitudes to the use of data to be presented at the next meeting (Data Strategy Team and Communications Manager)

11.05 Discussion on design of large-scale engagement to be included on the agenda for the next meeting, with supplier in attendance if possible (Data Strategy Team, Communications Manager, Stakeholder and Public Engagement Lead)

11.06 Update on review of the National Data Opt-Out to be included on the agenda for the next meeting (Data Policy Team and Data Strategy Team)

Item 1: Welcome and updates

Louise Greenrod (LG) opened the meeting and welcomed attendees. She explained that this was an extended meeting of the group to allow sufficient time for more strategic discussions.

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

LG invited comments on the change of name to the group from National Data Advisory Group to Data Strategy Advisory Panel. There were no objections from the group but it was agreed to circulate for members to comment or agree the change one final time.

Action 11.01: Circulate new terms of reference for the Data Strategy Advisory Panel to members for their approval (Data Strategy Team).

Action 11.02: Pending approval of the terms of reference, name of group to be changed from National Data Advisory Group to Data Strategy Advisory Panel (DSAP)

Members asked about plans to publish minutes of the group. The Policy Lead (Data Strategy Team) explained this was progressing and would take place once the name change of the group had been agreed.

Update on the Federated Data Platform

Head of Communications and Engagement, Head of Information Governance and Head of Transition and Implementation for the Federated Data Platform attended for this item.

LG began by confirming that the contract award announcement for the Federated Data Platform (FDP) had been published since the group last met, on 21 November 2023. It was also noted there was a simultaneous award for Privacy Enhancing Technology related to the FDP. The FDP team then gave an update. There had been widespread coverage in broadcast and print media, which had been balanced. A feedback portal for patients and the public had been established and the programme would follow up with people who had registered an interest. There was a rise in National Data Opt-Out (NDOO) rate immediately after the announcement, but this had significantly reduced by the end of the week and was now almost at usual daily levels. The team ran through the ambitions for the programme and gave a short update on the information governance framework, which had been developed with the help of stakeholder groups.

In discussion, members:

• were pleased that the launch had been balanced and felt this was in part due to the communications made before and around the launch. They were interested in the comparison with NDOO rates with GP Data for Planning and Research; it was confirmed that NDOO rates following the FDP announcement were significantly lower at this point. Members felt there needed to be further clarity on how the NDOO applied to personal data processed in the FDP. The Head of Communications and Engagement and Head of Information Governance explained that further information was being developed and a draft would be shared with the FDP “Check and Challenge” Group shortly;
• asked about engagement with NHS trusts on implementation. The Head of Transition and Implementation explained there were demand and delivery teams in place and that active engagement was being undertaken. The Head of Communications and Engagement added that there were also regional roadshows and engagement through clinical and comms teams;
• noted that it was important to be clear with the public on what the FDP was, with a simple explanation. Members also felt it was important to have tailored material for specific audiences, as well as ensuring everyone had a general understanding.

Action 11.03: Secretariat to arrange a demonstration of the FDP for the group.

Item 2: Where do we want to be in five years in terms of public trust and transparency on use of health and care data?

The Policy Lead (Data Strategy Team) facilitated this item. They explained the purpose of this session was for members to identify where we should be in five years’ time in terms of public trust and transparency: what would the most favourable outcome look like? Attendees were asked to identify ideas, which were then grouped into themes.

The key themes identified were:

• Data should flow seamlessly across health and care, with a more joined up and better patient experience.
• Meaningful public engagement on policies and programmes should be routine and thorough, with public and patient views incorporated into development, and a good understanding across the health and care system of how to engage with the public.
• Better information on how the public feel about the use of their data, with a better understanding of why people choose to use the National Data Opt-Out and clear and consistent tracking of sentiment.
• Raising awareness of how data and empowering the public, including people being able to access their data, see what is held about them, who has access and how it is used. There should be a clear understanding of which sectors need to use health and care data (including industry) alongside robust protections. How data is used should not be a surprise to people.
• More tailored and nuanced choices for people about how their data is used, with people in control of their own data.
• Greater professional trust in how data is shared and used, alongside public trust.
• Better benefits realisation, so that the transformative power of data can be realised.
• Data use that is ethical as well as legal.

Item 3: Where are we now and why?

The meeting then considered the current situation. Members felt that this was a journey we were part-way along and identified some areas that needed further work. In particular, the need for information on opting out to be clearer and that people had confidence in, as well as unresolved concerns about the selling and misuse of data by third parties. An additional reason for the current situation was that we tended to treat the public as a homogenous group, when there were a range of attitudes.

The Communications Manager (NHSE Transformation Directorate) presented a high-level summary of the NHS England-commissioned research on public attitudes to the use of health data, which segmented the public into six groups. The findings of this research would enable policy and programme teams to understand how to better address people’s concerns and would provide initial evidence to inform the large-scale engagement planned for 2024. The more detailed findings would be presented to the group at the at the next meeting.

Action 11.04: Data strategy team and communications manager to arrange a presentation of the findings of the NHS England-commissioned research on public attitudes for the next meeting.

Item 4: Options for closing the gap between vision and reality

This item began with a presentation on the large-scale public engagement planned for 2024. The Stakeholder and Public Engagement Lead (Data Access Team) and Communications Manager (NHSE Transformation Directorate) introduced themselves as leads for this work and presented on this item. £2 million had been allocated to March 2025 to fund public engagement, of which £1.5 million was earmarked for this large-scale exercise. The brief for potential suppliers had set out the topics for engagement but left the exact design to interested bidders. It was intended that public deliberations were the main delivery approach as the gold standard of engagement but that this would be complemented with other approaches (eg surveys). They noted the importance in the design phase of reaching digitally excluded groups, targeted groups to reduce health inequalities (Core20PLUS5 cohorts) and seldom-heard voices.

Topics to be included in the deliberations included the specific products aimed at improving trust and transparency mentioned in the data strategy (eg the data pact and standards for public engagement), reform of the opt out landscape and data access policy (including how we govern and accredit secure data environments). Initial findings would be published during the course of the engagement, with a final report.

In conversation, members were content with the mixed method approach. They asked whether health and care staff would be included in the engagement. However the team confirmed that staff were not a targeted group for the large-scale public engagement, although inevitably some individual members of staff might participate by being in one of the other targeted groups. They also asked about the process of developing the products such as the data pact during the engagement. It was noted there was a balance to be reached between a further delay in the products being finalised and taking the time to get them right.

Action 11.05: Team to return to next meeting to allow members to feed into the design of large-scale engagement, with the supplier in attendance if possible.

Members asked whether engagement on opts outs was specific to the National Data Opt Out, or broader. LG confirmed it would cover the broader opt out landscape. Members also asked about timelines for this review/reform work – including when policy decisions would be expected to be made. It was agreed to return to the group to discuss proposals in more detail.

Action 11.06: Team to return to next meeting in February with draft proposals on the plan and approach to opt-out review/reform.

Item 5: Immediate next steps

The Head of Data Strategy facilitated this item, asking members for one immediate next step. Points made included:

• The necessity of understanding how to integrate social care data into health systems such as the FDP
• Clarifying concepts such as data ownership
• Continuing the thinking about the longer-term outcomes to be achieved and how to get there

Item 6: Any other business

There were no items of any other business