Health Data Patient and Public Engagement and Communications Advisory Panel

The Health Data Public and Patient Engagement and Communications Advisory Panel is a group consisting of patient and professional representatives, with an interest in patient data. The main purpose of the group is to have a regular forum to share ideas, concerns and best practice around the use of health data, as well as invite views on the best ways to engage with patients and the wider public in an accessible way. The group shapes communications content and plans for public engagement and supports the development of credible and accessible materials.

The Panel includes representation from a diverse range of patient and public representatives (known as lay members), supported by organisations who champion the voice of the public and patients:

• Office of the National Data Guardian
• Understanding Patient Data
• Cancer Research UK (CRUK)/Association of Medical Research Charities (AMRC)
• Patient and public representatives (known as lay members)

Background

The Health Data Patient and Public Engagement and Communications Advisory Panel (PPECAP) was first established in Summer 2021 to support the delivery of the General Practice Data for Planning and Research (GPDPR) programme, and originally named the GP Data Patient and Public Engagement and Communications Advisory Panel.

Throughout 2023 the panel have been engaged in a wide variety of discussions on topics related to GPDPR, but beyond the immediate scope of the panel, to gain perspectives and input into key health data policies and programmes.

In recognition of the need to maintain and improve public and patient involvement in health data initiatives more broadly, in September 2023 the panel approved proposals from the secretariate to formally expand the scope of the group beyond the GPDPR programme. The revised panel is expected to cover two major additional areas:

1. NHS Federated Data Platform – a programme to roll out software that will sit across NHS trusts and integrated care systems (ICSs) allowing them to connect data they already hold in a secure and safe environment.
2. Key Data Saves Lives strategy initiatives, primarily regarding the major commitments to build public trust, such as our plans for large-scale public engagement.

The expansion will not impact the GPDPR commitments or detract from the original objectives of the group, but instead use their expertise and perspective in a more collaborative, efficient way.

The Panel is embedded in the communications and engagement strategy for the GP data programme, FDP programme and Data Policy team, and as such its findings will be fed into respective decision-making processes.

The Panel will be conducted in parallel to a number of other stakeholder groups covering specific elements of programme design and delivery.

See the Terms of Reference, which define the PPECAP’s role, membership and operating model.