Agenda

Attendees

1. Introductions

The Chair welcomed members to the meeting. The minutes from the previous meeting were agreed subject to the removal of some word duplication and were approved for publication. No declarations of interest were noted.

2. Opt-out – detailed policy development

DHSC presented an update on the reform of data opt-out arrangements. A representative had previously attended the panel in October 2025 when the policy project was at an early stage and returned to share the current position and gather the panel’s views.

The panel raised questions and observations.

• A panel member asked whether the opt-out applied to pseudonymised or anonymised data. DHSC confirmed that the National Data Opt-Out applied only to confidential patient information (identifiable data), and that whether pseudonymised data fell within scope depended on ICO guidance.
• The panel asked for clearer definitions throughout. Terms such as “confidential patient information,” “planning,” and “NHS-led research” needed to be precisely defined before policy could be developed effectively.
• A panel member asked whether the GDPR right to object would still apply. DHSC confirmed that the right to object was a separate process unaffected by opt-out reform, and the panel suggested this should be made explicit in all public-facing communications, as it provided an important safeguard for those with privacy concerns.
• The panel noted that the subject matter was complex and that the public information needed to be broken down into accessible information.
• The importance of reaching people whose first language was not English and those with additional needs was highlighted. DHSC confirmed that accessibility requirements were being factored in.
• The panel noted that focusing communications on people who had already opted out should not assume that everyone else had knowingly chosen to remain opted in. Many people may simply have been unaware of the option.
• Practical barriers to reaching patients were highlighted, including restrictions on the number of texts GP surgeries could send due to ICB budget constraints. The panel asked how patients could realistically be kept informed throughout their care journey.
• The panel noted that communications should make the benefits of data sharing personal and tangible. Framing data use around helping real patients, such as those with rare conditions. It was felt this would be far more persuasive than broad references to NHS benefit. DHSC agreed this aligned with a recommendation from the public deliberation to actively promote the benefits of research.
• A panel member added that media coverage of NHS data changes tended to default to negative framing, and that proactive, positive communications were therefore particularly important.

3. Single patient record – proof of concept

NHS England provided an update on the Single Patient Record (SPR) programme, building on a previous session held with the panel. The focus was on the technical architecture options under consideration and gathering the panel’s views.

Three possible approaches to how patient data could be stored and accessed were outlined:

• Hub and spoke model: building on the existing network of Shared Care Records, data is copied within regional integrated records, with a national service able to pull data from each region. This was considered the option most likely to deliver benefits most quickly, though developing more advanced capabilities would be more challenging given the varied approaches already in use across Shared Care Records.
• Central integration model: data is brought together into a nationally integrated record held within NHS England, regularly updated from frontline systems. This potentially offered greater capability for advanced uses over the longer term.
• Virtual layer model: no central data store; data remains in existing local systems and is pulled together on demand. This was considered the most complex option, particularly for making updates across multiple systems, and there were concerns about the ability to deliver all of the capabilities within the SPR’s scope.

It was noted that for most purposes a short delay in data access would not be a problem, and that the speed at which data needed to be available varied depending on the clinical use case.

Panel discussion

• From a patient perspective, the key priority was ensuring that healthcare professionals had access to accurate and relevant information at the point of care.
• The group highlighted the value of building on local progress, learning from regional approaches, developing iteratively and clearly communicating improvements.
• A panel member asked whether the different technical options would affect patients’ ability to view, comment on, or add to their own records. NHS England confirmed that access to records should not differ significantly between the options, though the ability to submit changes to a record was more complex under the virtual layer approach.
• Practical concerns were raised about NHS App accessibility for people who do not have access to a smartphone. The panel highlighted the broader issue of digital exclusion and the importance of ensuring the programme did not widen existing inequalities.
• The panel noted that the public were unlikely to believe their records were already being shared, as they routinely had to repeat the same information when accessing different services. Communicating clearly that work was underway to address this would be reassuring, but progress needed to match any public messaging.
• The panel emphasised the importance of honest, realistic communications. Communications should focus on real-world improvements and explain clearly what had been achieved, for whom, and how.
• A panel member requested that a plain English summary of the programme should clearly answer the key questions: what has been done, why, when, with whom, and for how long, as well as who benefits – patients, the NHS, or both, in the short and long term.
• NHS England acknowledged the complexity of public-facing communications at this stage.
• The panel discussed the value of an advocacy-focused communications approach, identifying trusted external voices who could speak credibly to different audience segments, particularly on social media. The panel was asked to suggest potential advocates.
• The panel noted the importance of connecting national work to local initiatives, such as integrated neighbourhood teams and local Shared Care Record programmes, and of ensuring consistent messaging across related programmes.

4. Any other business

The Secretariat reminded panel members of the following administrative points:

• Involvement claims submission and reminder of the deadline.
• Payroll queries should be sent directly to HR and copied to the HDPP inbox.
• General HDPP queries should be sent directly to the HDPP inbox, which was monitored by the Secretariat to ensure continuity.

The date of the next meeting was confirmed as 24 March 2026, 10:00–12:00.