Agenda

1. Introductions

The Chair welcomed members to the meeting. The minutes from the meeting held on 24 March 2026 were reviewed. Members requested an amendment to the section covering the previous discussion on the Federated Data Platform, noting that the record should more fully reflect the range of views expressed.

The panel discussed whether a future agenda item should be dedicated to the Federated Data Platform, to allow for a structured and focused conversation.

Action: NHS England to discuss scope and objectives with relevant leads and follow up at the next meeting.

No declarations of interest were noted.

2. Data access – public comms

NHS England presented draft content from updated public-facing web pages for the Data Access Request Service (DARS), seeking feedback on clarity, accessibility, and suitability for a general public audience.

The panel provided the following feedback:

The pages appeared to be written primarily for researchers rather than the general public.

The content was felt to be too generic and repetitive, with language that did not clearly answer questions such as what data is held, why it is held, and how it benefits patients.

The panel suggested that the pages should explain that data is only accessible to authorised individuals and information about data security should be given greater prominence.

Members noted a gap between the concept of individual patient data and the process of a researcher submitting an access request, and suggested this journey needed to be explained more clearly. Adding images was suggested as a way to make the pages more accessible.

NHS England confirmed that the reference to listening to public feedback reflects genuine engagement activity, including, for example, updates made following engagement with the Learning Disability and Autism Forum.

Action: NHS England to share printed copies of the web pages with panel members for written feedback.

Action: NHS England to return to the panel on 26 May with a revised version.

3. OpenSAFELY – engagement into commercial

NHS England, together with a representative from the Bennett Institute for Health Data Science at the University of Oxford (where OpenSAFELY is managed), presented an overview of OpenSAFELY and how NHS England manages requests from commercial organisations to access health data.

The panel discussed the question of whether and how the platform should be opened to commercial users.

Key themes in the discussion included:

The importance of public benefit as the primary criterion for assessing data access requests, including where the applicant is a commercial organisation.

Members noted that the NHS does not currently receive a financial return when its data is used by commercial organisations to develop profitable products, and that this was a recognised challenge.

The panel discussed due diligence processes for applicants, including large commercial organisations, and how ethical conduct is assessed. NHS England confirmed that applicants must meet security and other standards, and that the requirement for organisations to have a signed agreement with NHS England provides an additional layer of validation.

Members raised concerns about the risk of re-identification, including in light of future advances in AI. NHS England confirmed this risk is actively managed, including by keeping data within existing secure GP systems rather than creating a separate raw dataset, and noted that full anonymisation was not considered a viable alternative given the loss of data richness it would entail. The transparency of OpenSAFELY’s public code repository was highlighted as an important safeguard, enabling any inappropriate activity to be identified and scrutinised. Members suggested the panel and NHS England should be more confident in championing the medical advances made possible through responsible data sharing.

4. Any other business

The panel noted the departure of the outgoing Chair and thanked them for approximately 18 months of service, recognising their commitment to open, transparent, and honest discussion. It was confirmed that future meetings will be chaired by a representative of Understanding Patient Data. The outgoing Chair confirmed they would continue to attend as a representative of Cancer Research UK and AMRC.

Date of next meeting: 26 May 2026 – 10:00-12:00