Terms of Reference: Health Data Patient and Public Engagement and Communications Advisory Panel

Published 6 December 2023

Ref	Health Data Patient and Public Engagement and Communications Advisory Panel. Also referred to as PPECAP.
Author	NHS GP data Communications and Engagement Workstream, Federated Data Platform Programme, Data Policy Team
Engagement and communications panel sponsor	Head of Communications and Engagement, GP Data, NHS Digital
Circulation	Health Data Patient and Public Engagement and Communications Advisory Panel members Publication on NHS Digital website 21 February 2022. Updated version published on NHS England Transformation Directorate website – once approved
Dates considered by the panel	28 October 2021 – Initial Approval 1 February 2022 – Updated following review in January 2022 18 February 2022 – Finalised for publication 13 October 2022 – Updated and approved for publication 9 November 2023 - Updated and approved for publication
Purpose of document	This document sets out the Terms of Reference (ToR) for the Health Data Patient and Public Engagement and Communications Advisory Panel (PPECAP). This document defines the Panel’s role, membership, and operating model. It is expected that changes may be required as the GPDPR programme, FDP programme, and data policy workstreams progress. The ToR will be reviewed on a quarterly basis as a minimum, or as required as a result of any major changes.

The role of the Health Data Patient and Public Engagement and Communications Advisory 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:

Shape communications content and plans for public engagement

Play a consultative and advisory role on the best ways to engage and communicate with patients and carers and the public about health data as a whole.
To act as advisors and consultants on the development and implementation of the communication and engagement strategy for GP data and FDP.
Provide oversight on the development, design and delivery of the large-scale public engagement on data and associated trust products: the data pact, transparency hub and standards for public engagement.
The Panel will play a vital role in all editorial activities necessary to support the GP data programme, Federated Data Platform programme, and Data Policy workstreams, primarily regarding public engagement. Further information on the programmes can be found in the Background section of this document.

Support development of credible and accessible materials It will support the development of credible and accessible materials by:

Acting as a senior advisory Panel for questions and possible issues raised through the materials drafting and review stages.
Advising on who, how and when to engage patients and the public, to help shape the emerging communications content for health data programmes and policy teams.
Ensuring that all communications content, materials, and activities are informed by patient and public views during development, in order to build trust in the use of patient data and associated policies (e.g. Data access, opt-outs).
Giving guidance to those teams developing the materials and advising where additional content and/or materials may be necessary.
Representing the views as patients and members of the public, as well as parent organisations (where relevant) in providing assurance and approval of materials.
Being confident that the content provided in materials has been through sufficient review and rigour, to ensure the content is accurate and responds to concerns and challenges raised during testing, by wider stakeholders and by the Panel.
Ensuring that approved policy and programme decisions are incorporated clearly and accurately into the materials.
Challenging where specific content is thought to be inaccurate or misleading.
Reviewing the 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.
Acting as an escalation route, for questions and possible issues raised through the materials drafting and review stages.

General expectations

Review, comment upon, and approve the draft ToR for the group in the form of an initial approval, and on an ongoing basis for major updates
Drive and maximise the effective function of the group by ensuring the agenda, structure, and membership remain under regular review and under the responsibility of all members.
All group members will have authority and responsibility to suggest topics for discussion, changes to group membership, and or any area of improvement. The group structures and processes will be kept under regular review and amended through group consensus to maximise the effective functioning of the group.

In return, the NHS and DHSC Teams will commit to:

publishing minutes from panel sessions in a timely manner
taking onboard all feedback for consideration and incorporating changes where possible and feeding back to the panel to demonstrate where their input has been incorporated and has made an impact.
sharing relevant information and developments from the specified programmes with the panel for comment where appropriate
ensuring materials are shared in advance to allow the panel time to review and comment

Membership

The Health Data Public and Patient Engagement and Communications Advisory 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. These organisations are:

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

In addition to the above members, the Panel will be supported by the NHS Transformation Directorate’s GPDPR programme team, the FDP team and the Data Policy team. Additional representatives from NHS England or DHSC may attend the meetings as required.

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

Method of operation

Meetings
Independent Chair	The role of chair is rotated between the professional representatives from Office of the National Data Guardian, Understanding Patient Data and the Association of Medical Research Charities. The position rotates every four months.
Quorum	Chair and five other patient and public representative members (or alternative representatives) must be present. Members must give a minimum of 48 hours notice if they cannot attend (except in unavoidable circumstances), to ensure the meeting quorum can be met.
Frequency	Meetings will take place bi-weekly as required. A minimum of 2-weeks' notice will be provided ahead of any change in frequency.
Format	The meetings will usually be held via Teams or Zoom. There may also be requests for members to review materials offline or out of the regular meetings and to meet deadlines (at least one week) i.e., for web content or campaign content review. The Terms of Reference, agendas and action notes will be published on the NHS England Transformation Directorate website.
Standing Agenda	Apologies. Actions and review from previous meeting. Materials/presentations/agenda items for review. Any other business.
Governance	The Panel are accountable to the GP data programme, FDP programme, and Data Policy team.

Inputs

The following inputs will be provided to each Panel meeting:

Minutes and actions from the previous meeting
Programme/project updates

When required the Panel will also be provided with:

Materials for review by Panel
Papers and other materials for discussion

Escalation Process

Any serious issues or problems to be reported to the Head of Communications and Engagement, GP Data, NHS England, and if not resolved, to the GP Data for Planning and Research Programme Board, the FDP Programme Board, or the DHSC Data Policy Deputy Director.

Outputs

Outputs and publication of information about the Panel to include:

Minutes and actions arising
Within these, an update on progress on materials submitted for review
Decisions on questions/issues escalated to the Panel
This terms of reference, agendas, high level minutes and documents produced as outputs from meetings will be published on the legacy NHS digital website
Outputs of meetings will also be shared with NHS partners and colleagues, to inform the communications and engagement planning for the GPDPR and FDP programmes, and data policy workstreams (primarily regarding public engagement).

Expected behaviours and conduct

Trust and respect is at the heart of this work and members are expected to take part in line with the Nolan Principles. Patient and public representatives must also behave in line with NHS England’s Code of Business Conduct.

Panel members should feel they are in a safe place and are free to express views and concerns, confident that they will be listened to and without fear of reprisal.

There may be times when new public or patient representatives join the Panel. New members will be offered the opportunity to ‘buddy’ with an existing Panel member to support them whilst they settle in.

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

NHS England and DHSC can ask members to leave the group if their behaviour is deemed inappropriate, such as displaying repeated intolerance of other’s views, being aggressive or threatening, bullying, being repeatedly rude or deliberately offensive or breaching confidentiality (see below). 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, in relation to GP data programme, FDP programme, Data Saves Lives public engagement commitments, or any specific item on the agenda. Any interests must be declared and will be recorded and included in the published action notes. Panel members will decide if it is appropriate for the member to abstain from the meeting or part of the meeting.

Members of the Panel who have declared an interest will also need to consider any potential or perceived conflict of interest in their contributions to the discussions as a matter of good governance during the meeting and if they feel they are potentially conflicted at any point due to the nature of the discussion, 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 either verbally or by other means 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 in order to promote honest, frank discussion during group meetings. Comments and views will not be attributed to individual Panel members, without the prior agreement of that member. This includes meeting notes.
Panel members will be made aware of the NHS England 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 in the public domain.
Members will be informed about what is, and what is not, 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 in the public domain.
The action notes from meetings are published, however this is only done once the Panel have 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

As the Patient and Public Engagement and Communications Advisory Panel is designed to review and challenge all communications and engagement elements of the GP data and FDP programmes, as well as workstreams within the data policy team, primarily regarding public engagement, there will be significant cross-over between the documentation under review at these forums. As such, the interaction between these groups will need to be managed to maximise transparency and alignment.

This will be managed with full oversight and input from Patient and Public Engagement and Communications Advisory Panel members; members will be asked to review options regarding the approach to stakeholder group alignment as and when required.

Where advice, feedback, or guidance from stakeholder groups directly conflict, the GPDPR and FDP programmes 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 prior to any related programme delivery action. Any further challenges beyond this point will be dealt with on an individual basis.

Background

Iterations of the panel

In June 2021, the GP Data for Planning and Research (GPDPR) programme and the wider communications team agreed to set up an editorial review panel to oversee and agree the final external communications products to support a public information drive.

The GP Data Patient and Public Engagement and Communications Advisory Panel was established in August 2021 to support the GPDPR programme to meet those commitments and enable the collection of data for planning and research to begin. Since August 2021 the remit and influence of the Panel widened to cover wider engagement, communications, and operational issues related to GPDPR. The Panel’s work is now firmly part of the communications and engagement strategy and framework for the programme, providing an advisory role on patient and public engagement and communications in particular.

Data collected as part of GP data for planning and research for the purposes of this Terms of Reference describes health data of GP practice patients aged over 15.

Since the launch of PPECAP, the Panel has been providing input across various data programmes beyond GPDPR, due to overlapping interests and dependencies across programmes. The Panel have enjoyed engagement with other data programmes and appreciated understanding the broader health data space. Following positive engagement with PPECAP, programmes saw the benefit of using the Panel as a mechanism of engaging with patients and seeking feedback to inform workstreams across programmes. Building on this success, in Summer 2023 colleagues across data programmes in NHS England sought to expand the scope of PPECAP.

On 14 September 2023, colleagues from high-priority data programmes and policy teams – the Federated Data Platform (FDP) and Data Policy team colleagues working to deliver public engagement commitments in the Data Saves Lives strategy – engaged with PPECAP to ask the Panel to consider expanding the scope of their remit to support these additional areas The proposal was approved by the Panel on 28 September 2023. The Terms of Reference are now being updated to reflect the broader scope of the Panel.

The GPDPR programme are still committed to meeting the ministerial commitments. The expansion of PPECAP will not impact these commitments, but rather enhance collaboration across data programmes, reduce duplication of effort and amplify the impact of patient involvement with data programmes more broadly.

GPDPR

On 19 July 2021, Ministers wrote to GPs in England describing changes being made to the General Practice Data for Planning and Research (GPDPR) Programme. Patient Data collection will now only begin when the following criteria have been met:

the ability to delete data if patients choose to opt-out of sharing their GP data with NHS Digital, even if this is after their data has been uploaded
the backlog of opt-outs has been reduced
a Trusted Research Environment has been developed and implemented in NHS Digital
patients, carers, and the public have been made more aware of the scheme through a campaign of engagement and communication

GPES

In Summer 2022, it was acknowledged that that the technology underpinning the General Practice Extraction Service (GPES) is operating over capacity and is limited in capability due to being ten years old. It was agreed that immediate work was needed to safeguard the provision of existing direct care data collections, and to accommodate future requests.

Due to the urgency of the issues facing GPES, a proposal is being developed to move existing direct care collections onto new, more stable technology which has more capability and capacity to meet requirements. The resources required to resolve these issues are currently aligned to the GPDPR programme, therefore a reprioritisation exercise has taken place.

The commitment to realise the benefits of the using GP data for planning and research purposes remains, and work will continue towards meeting the ministerial commitments for the GPDPR programme, however, the focus for the 2022/23 financial year will shift towards resolving the issues for direct care as a priority.

The delivery team remain committed to engagement and transparency in all of their work and are keen to continue with the open work they began for GPDPR.

Public Engagement

The Data Saves Lives strategy placed building public trust and transparency at the forefront of our ambitions to harness the power of data for the future of health and care. Building public understanding through effective and transparent communications is one pillar of how we intend to build public trust, but it is equally important to meaningfully involve the public in decisions and changes to how their health data is used.

To deliver on the ambition for meaningful engagement we made this clear commitment in Chapter 1 of Data Saves Lives:

'We will undertake in-depth engagement with the public and professionals, through forums such as focus groups with seldom-heard groups, and large-scale public engagement on topics and questions that are high priority or particularly complex'

An Invitation to Tender will be published to procure a single supplier to deliver a comprehensive large-scale engagement programme over 2024 and 2025, including the delivery of public deliberations. The Data Policy team are committed to ensuring that this work is delivered to the highest standard.

Federated Data Platform

The Federated Data Platform (FDP) is software that will sit across NHS trusts and integrated care systems (ICSs) in England allowing them to connect data they already hold in a secure and safe environment. The software will be ‘federated’ across the NHS. This means that every hospital and Integrated Care Board will have their own version of the platform which can connect and collaborate with other data platforms as a ‘federation’. This makes it easier for health and care organisations to work together, compare data, and analyse it at different geographic, demographic and organisational levels and to share and spread new effective digital solutions.

The FDP will support five key NHS priorities:

Elective recovery – addressing the backlog of people waiting for appointments or treatments which has been exacerbated by the COVID-19 pandemic and winter pressures on the NHS.
Care coordination – enabling the effective coordination of care between local health and care organisations and services, reducing the amount of time that patients have to wait for discharge summaries, medicines, or home support measures before being discharged from hospital.
Vaccination and immunisation – supporting the vaccination and immunisation of vulnerable people while ensuring fair and equal access and uptake across different communities. Federated Data Platform (FDP) Copyright © NHS England 2023 6
Population health management – helping local care systems proactively plan services that meet the needs of their population. Improving the quality of data here will play a key role in allowing us to tackle health inequalities.
Supply chain management – helping the NHS put resources where they are needed most and spend more efficiently so that we get the best value for money.

The programme is committed to building public trust and confidence in how data is used within the platform and ensuring the views of the public inform future use.

Back to contents