Agenda

Attendees

1. Introductions

The Chair welcomed members to the meeting. The minutes from the previous meeting were agreed, subject to the addition of one missed word, and approved for publication. No declarations of interest were noted.

A new Deputy Director for Data Policy was introduced to the panel. They explained that their team was working across a range of projects requiring public input and that shaping policy around public needs and views would be central to their work. They expressed enthusiasm for hearing the panel’s perspectives.

A representative from NHS Highland attended the meeting as an observer, as their organisation was considering establishing a similar panel.

2. Transparency hub

DHSC presented on an early-stage project, led jointly across DHSC and NHS England, to create a central and easily accessible source of information for patients and the public about how health and social care data is collected, used, protected, and governed. The project aimed to address the current fragmentation of patient-facing information and bring it together in one place.

Public engagement carried out prior to the session had shown that people wanted plain English explanations, consistent messaging, transparency about safeguards, and clear examples of the benefits of data use. The proposed hub was designed to meet various levels of interest, with content readable in 60 seconds, 5 minutes, or 20 minutes. A layered approach was planned, with summary pages and links to more detailed information on topics including opt-out, data uses, types of data users, governance, safeguards, and key data programmes. The panel was asked for views on what should appear on the main hub pages and what could be accessible via links.

Panel feedback highlighted:

• Trust underpins all health data communications. Transparency and honest acknowledgement of this dynamic were considered essential.
• Leading with opt-out information risked discouraging public support. It was suggested that the benefits and value of data sharing should be communicated first and prominently.
• The panel asked whether individuals would be able to see a record of who had accessed their data, similar to how credit reports show access history. This type of visibility was felt to be reassuring to the public and could help people understand and question different types of access, including by pharmaceutical or biotech companies. DHSC noted this had arisen in recent public deliberations and was an important point to explore further.
• Panel members noted that approximately 5% of people opted out of data sharing, and that most patients expressed trust in the NHS and said they would support data sharing if it clearly helped others and was not misused.
• The term “data” needed clearer definition and scope on the hub. People often assumed health data referred only to GP or hospital records, whereas real-world health and care data was much broader, including information recorded in care homes or by social workers.
• Communications needed to support public understanding across all communities, including those whose first language was not English to ensure equality of accessible health information. The creation of an animation to explain data use accessibly was suggested.
• A web banner indicating the most recent updates or changes to the hub was proposed as a useful feature for returning visitors.
• The panel felt that any new communications approach needed to form part of a wider, coherent strategy aligning national and local messaging. Otherwise, this could create public confusion despite best intentions.
• The panel emphasised the importance of demonstrating tangible, evidence-based benefits. Communicators should not only say “you said, we did” but also explain the real-world impact. For example, what improvements had been achieved and why they mattered to patients. The panel emphasised the need for a “so what?” approach to closing the feedback loop with the public.
• More engagement with people who drew on social care services was considered important, including social care advisory groups and public representatives.

3. Single Patient Record

NHS England presented on the Single Patient Record (SPR) programme, which aims to bring together health and social care information into one accessible record for patients, carers, and clinicians.

The presentation covered the vision for the programme and the communications and engagement work under development. Following their discovery phase, they had begun framing the problem and identifying clear benefits of synchronised records, aiming to build a communications campaign using real data and evidence. They were also working to align narratives across related programmes — including shared care records, connected care records, the NHS App and neighbourhood health — to ensure consistent public messaging. The team’s next steps involved cross-referencing panel feedback with the emerging programme roadmap and developing a credible public-facing communications and engagement plan. They proposed returning to the panel to test materials and invited further suggestions on how best to work with the group.

Panel feedback highlighted:

• The panel welcomed the ambition of the programme and recognised its potential.
• Managing public expectations carefully was considered essential. The programme was a major, technically complex project likely to take many years to deliver, and communications should be realistic.
• Communicating that work was actively underway would be reassuring, but this needed to be matched by genuine progress.
• The panel emphasised leading with tangible, evidence-based content rather than vision alone. Communications should clearly describe the real-world problems being solved, the actions taken, and the measurable impact, such as shorter hospital discharge times – so that the public could see meaningful improvement.
• The need for a summary care record accessible in emergency situations was highlighted, particularly for patients and carers managing multiple long-term conditions who currently had to repeat the same information at every point of contact. Some carers had resorted to creating their own summaries because no official version existed.
• Clear boundaries need to be established around what could and could not be shared with the integration of social care data.
• The importance of integrating mental health data with physical health and pharmacy information was highlighted. For patients dependent on multiple services communicating effectively, for example around medication changes, the absence of integration had a direct impact on day-to-day care.
• Practical questions were raised about how a single patient record would be presented in the NHS App, particularly where a record might contain many data variables.
• Local integration initiatives with integrated neighbourhood teams and integrated care providers were highlighted as vital partners for national engagement. Members gave examples from areas already working towards integration and recommended that national work should connect with and build on local efforts rather than running in parallel.
• The panel advised against investing in branding, noting that patients cared most about outcomes and feeling known and recognised within the NHS system.
• Influencers and online advocates across different health communities were noted as potentially valuable communications partners, but a vetting process was considered essential to avoid amplifying inaccurate or harmful information.
• More work was considered necessary on linking health data with local authority and social care data, particularly for preventative planning.

4. Any Other Business

No items were raised.

The date of the next meeting was confirmed as 24 February 2026, 16:00–18:00.