Terms of Reference: Health and Social Care Data Public Panel

The Role of the Health and Social Care Data Public Panel

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

The role of the Panel is to:

• advise teams within NHSE and DHSC on how to support the maintenance and improvement of trust and transparency in the development and implementation of key data policies and programmes
• help to shape communications content for data policies and programmes, as well as plans for data-related public and professional engagement

The Panel will support the delivery of key data transformation programmes at NHSE and DHSC through:

• acting as a sounding board for evolving data policies and programmes, ensuring public trust and transparency are at the centre of change
• providing advice, recommendations, and views from a public perspective on specific questions and challenges presented by data policy and programme teams
• advising teams on how and when to engage patients and the public, to help shape the development of health data policies and programmes
• advising on the approach to communications, ensuring that communications content, materials, and activities are informed by patient and public views during development
• ensuring that content related to data policies and programmes has been through sufficient review and rigour, is accurate, and responds to concerns and challenges raised during testing by wider stakeholders and the Panel
• reviewing materials for plain English, checking for consistency in language, clarity, and ease of understanding for external lay/non-expert audiences
• ensuring that materials comply with accessible formats, in line with the approach agreed with accessibility groups
• raise questions and possible issues during the review stages of engagement material development
• for patient representatives on additional policy and programme groups: Act in accordance with respective group’s Terms of Reference, supporting the development and delivery of the respective programmes in a critical friend capacity

General expectations

Review, comment upon, and approve the draft Terms of Reference (ToR) for the group initially and on an ongoing basis for major updates.

Keep the group structures and processes under regular review and amend them through group consensus to maximize the effective functioning of the group.

Membership

The Health and Social Care Data Public Panel includes representation from a diverse range of patient and public representatives (known as lay members), supported by a small, representative set of organisations that champion the voice of the public and patients. These organisations are:

• Office of the National Data Guardian
• Understanding Patient Data
• Cancer Research UK (CRUK)/Association of Medical Research Charities (AMRC)
• National Care Forum

In addition to the above members, the Panel will be supported by the NHS Transformation Directorate’s Communications and Engagement team and DHSC’s Data Policy team. Additional representatives from NHS England or DHSC may attend the meetings as required if discussions relate to their policy or programme areas.

If a Panel member from a listed organisation is unable to attend a meeting but wishes to be represented, they may nominate a deputy who is informed and authorised to contribute on their behalf. Patient and public representatives are not permitted to send deputies in their absence.

Method of operation

Inputs

The following inputs will be provided to each Panel meeting:

• Minutes and actions from the previous meeting

When required, the Panel will also be provided with:

• materials for review
• papers and other materials for discussion
• programme/project updates

Escalation Process

Any serious issues or problems should be reported to the Lead Senior Communications and Engagement Manager, NHS England. If not resolved, they should be escalated to the Patient and Public Voice Partner team at NHSE at england.nhs.participation@nhs.net or the DHSC Data Policy Deputy Director.

Any issues or problems regarding payment for panel members should be escalated by contacting ContactHRandOD@england.nhs.uk.

Outputs

Outputs and publication of information about the Panel will include:

• minutes and actions arising
• updates on progress on materials submitted for review
• decisions on questions/issues escalated to the Panel
• terms of reference, agendas, high-level minutes, and documents produced as outputs from meetings will be published on the Transformation Directorate webpage.
• outputs of meetings will also be shared with NHS partners and colleagues who have presented at the panel, to inform the development of trust and transparency materials

Expected behaviours and conduct

Trust and respect are at the heart of this work. Members are expected to adhere to the Nolan Principles (Seven Principles of Public Life) and the NHSE Code of Business Conduct.

Panel members should feel safe to express views and concerns, confident they will be listened to without fear of reprisal.

Given the online nature of meetings, it is important that all members can speak without interruption and feel free to use other methods of communication during the sessions.

Members may be asked to leave the group if their behaviour is deemed inappropriate, such as displaying repeated intolerance of others' views, being aggressive or threatening, bullying, being repeatedly rude or deliberately offensive, or breaching confidentiality. This includes during meetings or in correspondence.

Declaration of interests

At the start of each meeting, the Chair will ask Panel members for Declarations of Interest related to DHSC and NHSE’s data transformation programmes or any specific items on the agenda. Any interests must be declared, recorded, and included in the published action notes.

Members who have declared an interest must consider any potential or perceived conflict of interest in their contributions to the discussions. If they feel conflicted at any point due to the nature of the discussion, they should declare this and abstain from the remainder of the discussion.

Confidentiality

We want all members to feel confident that the views they express in the meeting are confidential and will not be shared by other members without permission. Views may be shared confidentially between the Chair, business support staff, or the project or programme team and wider engagement and communications workstream.

• All Panel members are expected to maintain confidentiality to promote honest, frank discussion during group meetings. Comments and views will not be attributed to individual Panel members without their prior agreement. This includes meeting notes.
• Panel members will be made aware of the NHSE Privacy Policy, which describes how we collect and use personal data. Personal details of Panel members will be processed in accordance with this notice.
• Members may be privy to information that is not yet public and so should be treated sensitively.
• Members will be informed about what is confidential and asked to maintain absolute confidentiality. Any breaches will be taken seriously, with the Panel member concerned asked to leave. Members will be told when previously confidential information is ready to be made public.
• The action notes from meetings are published only once the Panel has reviewed and approved the content for publication. It is the responsibility of Panel Members to review the action notes and provide feedback if they are not going to be present at the following meeting.

Alignment and scope

The Health and Social Care Data Public Panel is designed to review and challenge multiple elements of key NHSE and DHSC data transformation programmes. The scope of the panel includes communications plans, engagement materials, and policy plans or documents.

There may be some crossover between the projects and materials reviewed at the Health and Social Care Data Patient Panel and the:

• Data Strategy Advisory Panel
• Large-Scale Public Engagement Steering Group
• Data for Research & Development governance group
• FDP Check and Challenge

This will be managed with full oversight and input from Health and Social Care Data Public Panel members. Members may be asked to review options regarding the approach to stakeholder group alignment as required.

Where advice, feedback, or guidance from stakeholder groups directly conflict, the Transformation Communication and Engagement team and the Data Policy Team will review the feedback and request confirmation from the Programme Board of decisions related to these conflicts. Stakeholder groups will be fully informed of the decisions made and the rationale regarding the decisions before any related programme delivery action. Any further challenges beyond this point will be dealt with on an individual basis.

Background

The panel has been in existence since 2021, going through the iterations outlined below: