PSP058: Patient and Public Involvement and Engagement 

Patient and Public Involvement and Engagement (PPIE) is one of the NIHR’s six core work streams as outlined in the Best Research for Best Health: The Next Chapter strategy:

The Research Delivery Network (RDN) works in partnership across the wider NIHR to deliver against the newly published Strategic Commitments for Public Partnerships that aim to make public partnerships diverse, inclusive and impactful. The RDN will work to deliver against key areas of focus between 2025 and 2030 namely:              

• Embed research inclusion - Make sustained progress in widening research participation, embedding research inclusion and increasing the diversity of the public and communities who participate in, shape and deliver research.

• Strengthen partnerships - Strengthen and grow  mutually beneficial partnerships between researchers and communities, and their community based organisations, to better reflect the diversity of the population.

• Improve reward and recognition - Make systems of reward and recognition for the involvement of people and communities more equitable. efficient and consistent across NIHR coordinating centres, infrastructure and research.

• Require feedback - In response to consistent demands from patients and the public, require those who commission, undertake and support research to provide feedback to the public and communities on their contributions.

• Strengthen capability and capacity - Improve access to evidence, materials, training and peer support so that research teams can conduct effective and meaningful public partnerships.

The Strategic Commitments and the work of the RDN PPIE teams will be delivered in accordance with the UK Standards for Public Involvement.

In addition, RDN PPIE activities will contribute towards the NIHR Outcomes Framework (NOF), namely Key Shared Outcome 3:

"The public are valued partners in research, improving its reach, quality and impact NIHR"

PPIE makes a significant and important contribution to the reach, quality and impact of health and care research delivery across the RDN by:

• Promoting research-awareness across a diverse range of public and patient groups;

• Empowering more patients and the public to participate in research studies;

• Increasing the voice of public and the patients in research design and delivery so that research is accessible to all; 

• Up-skilling the research delivery workforce to have a deeper understanding of patient and public priorities, needs and values that shape motivations to participate in health and care research studies. 

This POF Support Page (PSP) provides advice and guidance for RRDNs to help with the fulfilment of objectives outlined in the NIHR RDN Performance and Operating Framework (POF).  PPIE programmes and activities refers to the delivery of Research Delivery Network (RDN) managed PPIE services; promotion of the Be Part of Research (BPoR) and Join Dementia Research (JDR) services and strategic capacity and capability planning for community engagement initiatives such as the Research Ready Communities programme.

Additional PSPs (below) provide detailed guidance for the contractual delivery requirements at a programme level as part of the Performance and Operating Framework (POF). These are;

• PSP070: Participant in Research Experience Survey (PRES) - refresh currently in progress

• PSP074: Public Research Champions 

• PSP093: Research Ready Communities

The RDN Stakeholder Engagement and Communications Toolkit hosts additional tools and templates to support the planning and delivery of the PPIE programmes. The national PPIE toolkit is also recommended resource for planning, signposting and templates for use.

PPIE should be fully integrated into the RRDN's operational strategy. PPIE Leads should engage regularly with their RRDN Director and Research Delivery Managers and conduct additional stakeholder engagement with internal and external partners, (including under-served communities) to inform the scope pf their role and responsibilities in their locality. Excellent partnership working is key for this role.

PPIE Leads are encouraged to co-develop an annual plan of activity, together with a range of stakeholders and identify their targets, milestones and deliverables for the year ahead. Key stakeholders should include Public Partners (e.g. Research Champions), senior managers within the RRDN, PPIE Leads within delivery organisations and wider community settings and RRDN Research Delivery Managers. 

RRDNs may wish to coordinate PPIE activities across their supra network. This is particularly encouraged for situations where a substantive post may be vacant for some time or when a PPIE Lead is new to the post. Cross-region collaboration helps to build relationships across the network and to improve efficiency and sharing of best-practice amongst colleagues. 

Resources for BPoR and JDR are provided in the BPoR toolkit  and the JDR Toolkit. RRDNs are encouraged to notify the RDNCC Communications team of any interesting or inspirational case studies, news stories or public/patient feedback that may be of interest to share as part of NIHR-wide communications and impact reporting. Please contact cdncc.ppt@leeds.ac.uk for any PPIE-related communications and comms.jdr@nihr.ac.uk for BPoR/JDR-related content. RRDNs are also encouraged to send direct feedback about any of the digital services to the BPoR team (bepartofresearch@nihr.ac.uk) or the JDR Team (jdr.professionals@nihr.ac.uk).

RRDNs are required to appoint a PPIE Lead (1.0 WTE minimum) to manage the delivery of the PPIE programme of work in their region. This commitment is required to ensure that minimum deliverables can be met and that necessary expertise for PPIE and community engagement are available to support the research workforce.  

The requirement can be flexible in how the role functions within a region. For example, RRDNs can have the 1.0 WTE function split between 2 members of staff.  However, a minimum resourcing standard for all RRDNs is required to appropriately deliver the standard PPIE requirements of the POF. PPIE is also one of the strategic objectives for the RDN, therefore it is vital that adequate resourcing and support for this role is provided. 

RRDNs are encouraged to work collaboratively within their supra network region to deliver the required PPIE deliverables. RRDNs may want to assign leadership of specific PPIE initiatives, like the Public Research Champions and Participant in Research Experience Survey to individual RRDN PPIE Leads within their supra network for efficiency and effectiveness of delivery, e.g. one PPIE Lead may take overall leadership for delivery of PRES with other RRDNs taking a more supporting role in this initiative.

The monthly PPIE Forums are co-hosted with a member of the RDNCC and RRDNs to provide an opportunity for sharing of updates, problem solving, sharing of best-practice and to offer peer support as part of a ‘Community of Practice’. 

They are a key platform for communication between the RDNCC and RRDNs. RRDNs are required to send a representative (or deputy) with strategic and/or operational responsibility for PPIE to the monthly RDN PPIE Forum meetings. It may be relevant/appropriate to send more than one representative in some cases, however RRDNs are advised to consider the content of the agenda when selecting attendees from their region. 

RRDNs and the RDN Coordinating Centre will shape the agenda for the meetings to ensure they are of maximum value to RRDNs. RRDN representatives are invited to put themselves forward to co-chair meetings with the Coordinating Centre. RRDNs can suggest topics for future agendas and are invited to give feedback about the running and management of the meetings, to promote continual improvements.

• For further information about this programme, please refer to the POF Support Page on Research Ready Communities. 

For further information about this programme, please refer to the POF Support Page on Public Research Champions 

For further information about this programme, please refer to the POF Support Page on Participant in Research Experience Survey (this link will be added when the PSP is complete) 

We advise that RRDNs utilise their stakeholder relationships and Public Research Champions to help boost awareness of and sign ups to JDR (both for people diagnosed with dementia and members of the public). 

PPIE leads should work together with colleagues from Research Delivery and delivery organisations to plan awareness-raising campaigns and activities to help improve engagement and awareness of JDR locally. Some examples of how teams have successfully engaged new stakeholders with JDR are provided below: 

• Care homes

• Memory clinics

As set out in the UK Standards for Public Involvement, all parts of the NIHR infrastructure should involve the public and patients in their governance and leadership. This ensures that Public Partners have a voice in the decision making and strategic vision for health and social care research.        

There are a number of key documents to be used by PPIE Leads to assist in the embedding of public voice across their region, including within governance frameworks and processes. These include: 

• Information on involving the public in research;

• Payment guidance for researchers and professionals;

• Learning for Involvement. 

Partnering with patients, service users, carers and communities to improve the relevance, quality and impact of our research is one of the NIHR six core work streams. We are guided by the new NIHR strategic Commitments and the key areas of focus for PPIE, together with the UK standards for Public Involvement to help us ensure that Public Partners are given the opportunity and scope to successfully demonstrate the impact and value of their work.

RRDNs play a key role in helping the NIHR to meet its aims for PPIE through the maintenance of strong and meaningful collaborations with people and communities that extend beyond the reach of geographical regions and across all populations (including under-served groups).     

RRDNs are expected to support the work of RDN through the promotion of national PPIE opportunities and the recruitment of a diverse group of people willing to be involved in engagement and involvement opportunities across the RDN wider NIHR and as required by partners such as DHSC.

In order to build a culture of partnership working in health research that is open and transparent, we need to include a wide range of perspectives and lived experiences. This promotes a culture of inclusivity and ensures that people’s contributions in health and social care research are valued and appropriately recognised. This in turn will help to build trust in research within communities (including those defined as under-served) and increase the likelihood of people becoming involved in health and social care research.

Angela Polanco

National Head of Public Engagement

Email: rdncc.ppt@leeds.ac.uk

Be Part of Research 

Email: bepartofresearch@nihr.ac.uk

Join Dementia Research    

Email: jdr.professionals@nihr.ac.uk 

BPoR: Be Part of Research

DHSC: Department of Health and Social Care

JDR: Join Dementia Research

NHS: National Health Service

NIHR: National Institute for Health and Care Research

NOF: NIHR Outcomes Framework

POF: Performance and Operating Framework

PSP: POF Support Page

PPIE: Public and Public Involvement and Engagement

PRES: Participant in Research Experience Survey

RDN: Research Delivery Network

RDNCC: Research Delivery Network Coordinating Centre

RRDN: Regional Research Delivery Networks

SEC: Stakeholder Engagement and Communications

WTE: Whole Time Equivalent 

Version number: 4.0 

Effective from date: October 2024

Content revisions:

• Minor language updates throughout

• Terminology change from LCRN to RRDN and partner organisation to delivery organisation, CSP to PSP

• Removal of PPIE Impact Framework and references thereof

• Edits to reporting requirements and scope of PPIE Leads for 2024/25

• Inclusion of NIHR Strategic Commitments