Data Strategy Advisory panel minutes May 2026

Date: Thursday 21 May 2026

Time: 11am to 1pm

Format: Virtual

Secretariat to send out calendar invite for the next Data Strategy Advisory Panel on Thursday 17 September 2026, to be sent out to attendees 

Joint Head of Data Strategy to incorporate member feedback into the audit design and follow up with relevant members on specifics. 

DHSC to convene a research subgroup to discuss the SPR research and clinical trials provisions in more detail.

The Chair welcomed new members and briefly reiterated the role of the Data Strategy Advisory Panel as a forum to advise on the safe and secure use of health and care data, bringing together external experts to provide advice, challenge, and diverse perspectives on emerging policy and strategy. 

The minutes of the February 2026 meeting were confirmed.

There was one outstanding action from the February 2026 meeting relating to a scheduled update on COPI reform. This would be brought to a future meeting given the current focus on the Health Bill.

Presented by: Colin Wilson, Deputy Director for Research Infrastructure in the Office for Life Sciences (DHSC/DSIT) 

CW gave an overview of the UK Biobank incident, as well as the follow-up actions. 

Ministers made statements to both Houses of Parliament at the earliest opportunity. 

Nicola Perrin declared a conflict of interest as a board member of UK Biobank. 

Members discussed the incident. They were concerned about damage to public trust in health data handling, with the risk that this incident would affect perceptions of all NHS data sharing, not just Biobank. This was seen as a challenge at both local and national level, with programmes already feeling the impact.  

New polling instigated by Understanding Patient Data shared at the meeting suggested that 1 in 3 respondents recalled media stories about Biobank but opt-out intent had not increased significantly as a result, with a greater proportion of respondents saying coverage had made them more supportive of using health data for research rather than less. 

Members stressed the need for a consistent and enforceable definition of what constitutes a secure data environment, with output checking as a core requirement. 

The chair noted that work to define what an SDE means was currently underway.  

A short description of a proposed data asset audit was presented, framed in the context of the UK Biobank incident by the Joint Head of Data Strategy.

Members broadly welcomed the audit. Key themes from the discussion included: 

Suggestion from DSAP members that we should start with major assets first, but then expand to cover other assets, including legacy data held by university hospitals and academic research teams.  

SDEs are not always the right tool; some legitimate research requires data to be removed, including for combination with international datasets. The audit and associated guidance should address how SDE-to-SDE transfers and other safe data export routes work. 

The Joint Head of Data Strategy confirmed that the audit, the guidance being developed following the ministerial statement to Parliament, and SDE policy work are being treated as an interconnected package rather than separate workstreams.  

Action: Joint Head of Data Strategy to incorporate member feedback into the audit design and follow up with relevant members on specifics. 

Before the next item, The Chair thanked all those across DHSC, NHS England, DSIT and external stakeholders who supported the response to the UK Biobank breach.

Presented by: Head of Data Policy (DHSC).

Head of Data Policy provided an update on the Health Bill, noting that second reading is due in early June, followed by committee stage where the bill will be examined in detail. It will move to the Lords after summer recess. 

The Single Patient Record (SPR) was highlighted as the most significant element for patients, receiving broadly positive reception in the King's Speech debate, though peers raised questions around data security, public confidence, and practical matters such as carer and proxy access. 

Members broadly welcomed the SPR, with patient representatives strongly supportive of the principle that patients want clinicians to have access to their history, and the current fragmentation causes real harm.  

Strategic steers provided by members included:  

It would be helpful if the Bill established red lines around SPR data never being used for marketing or insurance purposes.

Wider policy changes around opt-out and COPI reform are important context for the Bill, and would establish the wider framework in which SPR operates. 

How social care is included in the SPR was seen as important to its success and flagged as a priority.

Changes to the public and patient involvement infrastructure (in other parts of the Bill) was flagged as a risk, which could harm the data policy proposals.

The chair agreed to convene a subgroup with members who have a particular interest in research aspects of the SPR, including clinical trials, to work through the detail. 

Action: DHSC to convene a research subgroup to discuss the SPR research and clinical trials provisions in more detail.

Presented by:  Deputy Head of Communications and Engagement. 

Deputy Head of Communications and Engagement provided a communications update on the Bill and noted that a key communications priority is clearly explaining to the public what the SPR does and does not do, and that work is underway to amplify clinician voices. Ahead of the second reading, the team are exploring additional activity, including background briefings for health journals to allow more technical questions to be addressed. Members were thanked for their engagement in the run-up to the bill's introduction.

Presented by Rebecca Llewellyn, Director of Data Management and Transformation within NHS England.

Rebecca Llewellyn provided an update on the Federated Data Platform (FDP). Now in its third year of operation, the programme is entering a contract review period.  

Members flagged that increased media and parliamentary attention around the current supplier, with some organisations choosing not to adopt the FDP and others requiring significant reassurance before proceeding. 

Concerns were also raised around GP data being ingested into the FDP in ways that may not have been anticipated by existing data sharing agreements. As well as the current access controls. The process for triggering the contract extension was also queried. 

Action: Members are invited to submit any outstanding questions in writing for follow-up outside of the meeting.

The Chair noted that the key outstanding item was the forthcoming GP engagement, which had been referenced during the meeting and for which several member organisations are already represented on the steering group. The next meeting will be held in mid-September ideally in person in 39 Victoria Street, London. 

The Chair thanked members for their contributions and closed the meeting.