Meeting minutes - May 2025

Date: Wednesday 7 May 2025

Time: 11- 12.30

Venue: Teams call

Chair: Louise Greenrod, Deputy Director - Data Policy

David Boath - Data Analyst, Local Government Association, attending on behalf of Philippa Lynch

Dr Nicola Byrne - National Data Guardian for Health and Care

Martin Green - CEO, Care England

Matt Hennessey - Chief Intelligence and Analytics Officer, NHS Greater Manchester

Phil McCarvill - Director of Policy and Government Affairs, Academy of Medical Royal Colleges, attending on behalf of Jeanette Dickson

Nicola Perrin - Chief Executive, Association of Medical Research Charities

Anna Steere - Head of Understanding Patient Data

Head of Data Access and Public Engagement (Joint Digital Policy Unit)

Senior Policy Lead – Data Access (Joint Digital Policy Unit)

Apologies

Chris Carrigan - Expert Data Adviser, Use MY Data

Dr Jeanette Dickson - Chair, Academy of Medical Royal Colleges

Philippa Lynch - Senior Data Specialist, Local Government Association

Rachel Power - Chief Executive, Patient’s Association

Actions

16.01 - Action 9.03 to be closed, to be replaced by action 16.02 below.

16.02 - Secretariat to arrange a broader discussion on longer-term data strategy for the NHS, after publication of the Spending Review and 10 Year Plan.

16.03 - Secretariat to share link to Request for Information (RFI) for a Single Patient Record to DSAP members.

Item 1: Welcome and updates

Louise Greenrod (LG) welcomed attendees, including Anna Steere, attending her first meeting as the new Head of Understanding Patient Data.

The minutes of the previous meeting (4 March 2025) were agreed.

LG provided an update on previous actions. The meeting agreed to close the outstanding action on FDP (9.03) as it was more appropriate to include it as part of a broader conversation on the longer-term strategy for use of data in the health and care system. The meeting also agreed it would be helpful to have a discussion around how recent developments (e.g. the Single Patient Record and Health Data Research Service) fitted together to create the broader strategy for the NHS.

LG ran through recent updates. The main update was the Prime Minister’s announcement of plans to integrate NHS England into DHSC. This was still at an early stage, although a programme board (chaired by Alan Milburn and Penny Dash) was now established. A bill would be needed to transfer NHS England’s functions to DHSC, including those related to data. The 10-Year Plan was still being drafted, with an expected publication date of early summer. The development of a Health Data Research Service was announced on 7 April. Finally, work continued with the Single Patient Record, with NHS England recently launching a supplier request for information. This included the core vision for the SPR.

Item 2 – Recap of work to date on data access

The head of Data Access and Public Engagement and the Senior Policy Lead for Data Access presented a comprehensive update on the evolution and future direction of data access policy, including the transition to secure data environments (SDEs), governance reforms, accreditation pilots, and public engagement findings. These had the strategic aim of consolidating and simplifying the research data infrastructure while ensuring public trust, security, and value for the NHS.

The meeting discussed plans for SDE accreditation, focusing particularly on the scale of accreditation and at what level accreditation would sit. The Head of Data Access responded that this would depend on the structure of the SDE ecosystem and to some extent DHSC’s ability to shape it. However, he anticipated that accreditation within NHS settings was likely to occur at a regional level at minimum - favouring fewer but higher-quality SDEs. The role of registries was also mentioned, this would be addressed later in the year.

Item 3: Looking to the future

The Head of Data Access and Public Engagement and the Senior Policy Lead for Data access presented on the Health Data Research Service (HDRS), an initiative announced by the Prime Minister on 7 April, to enable secure, streamlined access to NHS and health data. They also discussed ongoing reforms to simplify the governance around data access and develop a long-term framework.

The following points were raised in conversation:

• The difficulty in being able to make a clear distinction between 'research' and 'evaluation', the varying levels of public trust between NHS/academic versus industry-led research, and the need for governance to reflect these differences. In response, it was felt that any governance would have to balance distinguishing between different use cases and acknowledging distinctions based on who the user is (such as distinguishing between NHS and external users, although this might cause difficulties for NHS and industry partnerships).
• Maintaining public trust was important, and while good progress had been made with recent large-scale engagement, it was recognised that public trust might be influenced by the technology and policy choices used to deliver HDRS. However, although yet to be decided, it was anticipated that there would need to be a new procurement for HDRS technical elements and would also be dependent on the organisational vehicle established to deliver HDRS.
• There were questions raised around sequencing too, as identifying the right mode of governance reforms depended on the form of HDRS, but the exact set up of HDRS also depended on the governance arrangements. People wanted to understand the roadmap to reaching the end state. It was noted in response that the governance reforms were intended to run alongside and align with proposed changes to legislation.
• Although HDRS would be set up to facilitate health research, it was important to recognise the importance of other types of organisational boundaries – such as local authorities for public health – in its development.

Item 4: Any other business

Two points were raised:

• The current status of the Life Sciences Sector Plan. This was currently in draft form, with details still being developed.
• Current thinking on COPI reform and possible changes to who made decisions around the use of data for secondary purposes in GP records, particularly in relation to the Single Patient Record (SPR). The policy thinking was ongoing. However, the SPR was not expected to address secondary use of data in the short to medium term.

The next meeting would be a face-to-face meeting planned for the summer, to align with announcements around the 10-Year Plan and Spending Review.