The GP Data Patient and Public Engagement and Communications Advisory Panel (PPECAP) was established in Summer 2021 to support the delivery of the General Practice Data for Planning and Research (GPDPR) programme. It followed a letter that  ministers wrote to all GPs in England in July 2021  describing changes being made to the 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

The GP Data Patient and Public Engagement and Communications Advisory Panel has been set up to support GPDPR to meet these criteria, and enable the collection to start.

The panel membership is made up of patients and professional representatives from organisations 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 data sharing, as well as invite views on the best ways to engage with patients and the wider public in an accessible way.

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

The Terms of Reference are reviewed on a quarterly basis as a minimum, or as triggered by any major changes to ensure they are fit for purpose. Over the course of the programme, it is expected some changes may be made.

A formal review of the Terms of Reference was undertaken in January 2022 to ensure the group is delivering for its members against the stated purpose of supporting the proper implementation of the GPDPR programme. The content has been updated accordingly and revalidated with members.

Aims and objectives of the Panel

1. To act as advisors and consultants on the development and implementation of the four phases of the communication and engagement strategy.
2. To advise on who, how and when to engage patients and the public, to help shape the emerging communications content.
3. To ensure 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.

The panel will play a vital role in all editorial activities necessary to support GPDPR. It will support the development of credible and accessible materials, by: 

• co-creating, reviewing, and providing patient and public perspective to all content produced by the wider NHS and NHS Digital to support the public communication and implementation of the GPDPR collection
• 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

The panel will review a range of materials and collateral from different sources to include:

• communications content to support engagement activities
• communications content to support the public information drive
• accessibility materials to support the public information campaign including information in different formats and languages

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.

Membership

The GP Data for Planning and Research Public and Patient Engagement and Communications Advisory Panel represents organisations/areas with knowledge and expertise in patient and public experience of healthcare, including: 

• Office of the National Data Guardian
• Understanding Patient Data (until end October 2021) 
• UseMYData 
• Healthwatch
• Association of Medical Research Charities (AMRC)
• patients and members of the public - known as lay members 

In addition to the above members, the panel will be facilitated by NHS Digital and further invitees from NHS Digital and NHS England & Improvement will attend as required to represent the programme, its over-arching governance, and wider benefits.

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 make decisions on their behalf. Lay members will attend when they can and will not send deputies in their absence.

Method of operation

Meetings

Escalation process

Any serious issues or problems are reported to the GP Data Programme Head and if not resolved, to the GP Data for Planning and Research Programme Board.

Outputs from the meeting and publication of information about the Panel will include:

• high-level meeting notes and actions arising from the meeting - within these, an update on progress on materials submitted for review
• feedback on questions posed to the panel
• issues escalated to the Programme Head or Programme Board - the terms of reference, agendas, high level minutes and documents produced as outputs from meetings will be published on the NHS Digital website
• outputs of meetings will also be shared with NHS partners and colleagues, to inform the communications and engagement planning for GP Data for Planning and Research

Ways of working

Expected behaviours and conduct 

Trust is at the heart of this work.

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.

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.

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 GP Data for Planning and Research 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 Digital 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.

Parallel stakeholder groups

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

Find out more about our GPDPR assurance groups.

View 2021 and 2022 meeting agendas, action notes and outputs