Agenda

1. Introductions

The Chair welcomed members to the meeting.

The minutes from the previous meeting were agreed and approved for publication.

No declarations of interest were noted.

2. Subgroup updates

PPV panel members provided updates from two subgroups they attended. The first, the Data Strategy Advisory Panel, focuses on providing strategic advice on health data policy. The second, the Check and Challenge Group, acts as a critical friend to key digital health programmes.

Panel members shared the key themes and discussions from both groups.

Published minutes from the Data Strategy Advisory Panel can be found here: Data Strategy Advisory Panel minutes – NHS England Digital and published minutes from the Check and Challenge Group can be found here: NHS England » Data Transformation Check and Challenge Group – minutes and action notes

Following the subgroup updates, the panel held a broader discussion on a topic that took place within the Check and Challenge group meeting.

Discussion: NHS Federated Data Platform supplier. The panel discussed the suitability of Palantir as a supplier for the NHS, arrangements relating to data sharing and access, the need for clear and transparent communications about data use to effectively manage growing public interest. It was noted that the supplier had been selected as the most technically capable option offering value for money, in the absence of suitable alternatives.

3. Presentation: Cohort 4 public deliberation – linking health and non-health data

A presentation was given on the findings from Cohort 4 of the public deliberation programme, which ran from November 2025 to January 2026 and focused on linking health and non-health data. The programme has now run four cohorts, each involving 120 members of the public across four locations and online.

Key recommendations from Cohort 4:

• Data linking should only proceed where there is clear public benefit and transparent purpose.
• People must be able to opt out of health-to-non-health data linking, with clear information on how to do so.
• A public register should record all data linking requests and outcomes.
• Individuals should have access to an audit trail showing who has accessed their linked data and why.
• Data accuracy was a significant concern; people should be able to question and appeal decisions made using their data.
• In the event of a data breach, affected individuals must be informed promptly with a clear explanation of risks and any protective action.
• Communications about data linking must be clear, accessible, and regularly repeated.

The panel welcomed the thoroughness of the work. Points raised included the importance of data accuracy and the technical challenges of correcting health records, how patients can challenge inaccurate data that may affect areas of their lives such as insurance, and the need for communications to be balanced and honest rather than promotional. Concerns were also raised that linking health data with benefits or immigration data could deter vulnerable groups from engaging with health services, potentially worsening health inequalities.

The Cohort 4 report is expected to be published in late spring, subject to approvals. An animation summarising the programme’s work and an independent evaluation report are also in development.

New subgroup opportunities

Two new subgroups are being established and are seeking Patient and Public Voice partners from the panel:

• Opt Out Advisory Group – to advise on opt-out reform as it progresses. Expected to meet quarterly.
• Future Public Engagement Advisory Function – to advise on future engagement topics and bring the patient and public perspective. Expected to meet quarterly.

Members were asked to express interest by emailing the Health Data Voices inbox.

4. Any other business

Members were asked to direct all correspondence to the Health Data Voices inbox during a period of reduced secretariat capacity.

The Chair thanked a departing panel member for their thoughtful and valuable contributions during their time on the panel.

Date of next meeting 28 April 2026 – 16:00-18:00.