CSP058: Public and Patient 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:

"We partner with patients, service users, carers and communities improving the relevance, quality and impact of our research. NIHR’s research is shaped in collaboration with patients, service users, carers and communities. People contribute at every stage of the research pathway and also play a vital role by volunteering to participate in studies and trials. We are determined that their perspectives and experiences are heard and acted upon and that their contributions are valued and recognised."

The Clinical Research Network (CRN) works in partnership across the wider NIHR to deliver against the aims of the NIHR’s PPIE Strategy: Going the Extra Mile and in accordance with the UK Standards for Public Involvement. Within the CRN specifically, PPIE programmes and activities are designed to support our overall purpose:

"To make people and the NHS better by enabling and embedding high quality clinical research as an integral part of care". Best Research for Best Health: The Next Chapter.

The CRN Coordinating Centre (CRNCC) and the Local Clinical Research Networks (LCRNs) work collaboratively with patients, the public and carers and are guided by a set of values and principles that uphold the key pillars of PPIE: 

(a) Participant-centred: We never lose sight of the fact that the research we do is for patient and public benefit;

(b) Equity of access: We work to ensure patients, carers, the public, and healthcare professionals, from all parts of England and from all areas of healthcare, have opportunities to participate in and benefit from the widest range of high-quality health and social care research studies;

(c) Patient involvement: We are committed to engaging patients, carers and the wider public as Public Partners in all aspects of our activities to enable high quality health and care research and to ensure the experience of participating in research is positive and meaningful for all;

CRN PPIE activities 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 CRN 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 Contract Support Page provides advice and guidance for LCRNs to help with the fulfilment of objectives outlined in the NIHR CRN Performance and Operating Framework (POF) 2023/24.  PPIE programmes and activities refers to the promotion of Clinical Research Network (CRN) managed PPIE services; Be Part of Research (BPoR) and Join Dementia Research (JDR).

Additional Contract Support Pages (below) provide detailed guidance for the contractual delivery requirements at a programme level as part of the Performance and Operating Framework (POF) 2022/23. These are;

• Participant in Research Experience Survey (PRES)

• CRN PPIE Impact Framework

• Public Research Champions

• Research Ready Communities

The CRN Stakeholder Engagement and Communications (SEC) Toolkit hosts additional tools and templates to support the delivery of the PPIE programmes.

PPIE should be fully integrated into the regional LCRN’s overall operational strategy. It is recommended that PPIE Lead engage regularly with their Chief Operating Officer (COO) and Research Delivery Managers. Additional stakeholder engagement with internal and external partners, including under-served communities will form part of the role and responsibilities of the PPIE Lead in their locality, therefore excellent partnership working is key for this role.

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

LCRNs may wish to coordinate PPIE activities across their supranetwork. This is particularly encouraged for situations where a post may be vacant for some time or when a PPIE Lead is new to the post. Cross-region collaboration is encouraged to help build relationships across the network and to improve efficiency and sharing of best-practice amongst colleagues. Annual PPIE delivery plans should include objectives for the following programmes of activity alongside PRES targets and PPIE Impact Framework reporting requirements:

• A continuous improvement project for PRES;

• Delivery plan for Research Ready Communities;

• Plans for local PPIE awareness and engagement activities (e.g. events, International Clinical Trials Day);

• Delivery plans for increasing awareness and engagement with BPoR and JDR digital services. 

Resources for BPoR and JDR are provided in the SEC toolkit to support BPoR and for the JDR Toolkit. LCRNs are encouraged to notify the CRNCC Communications team of any potential case studies, news stories or public/patient feedback that may be of interest to share as part of NIHR-wide communications and CRN CC impact reporting. Please contact crncc.ppie@leeds.ac.uk for any PPIE-related communications and comms.jdr@nihr.ac.uk for BPoR/JDR-related content. LCRNs 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).

LCRNs 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, LCRNs can have the 1.0 WTE function split between 2 members of staff.  However, a minimum resourcing standard for all LCRNs is required to appropriately deliver the mandatory PPIE requirements of the POF. PPIE is also one of the strategic objectives for the CRN, therefore it is vital that adequate resourcing and support for this role is provided. 

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

The monthly PPIE Forums are co-hosted with a member of the CRNCC and LCRNs 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 CRN Coordinating Centre and LCRNs. LCRNs are required to send a representative (or deputy) with strategic and/or operational responsibility for PPIE to the monthly CRN PPIE Forum meetings. It may be relevant/appropriate to send more than one representative in some cases, however LCRNs are advised to consider the content of the agenda when selecting attendees from their region. 

LCRNs and the CRN Coordinating Centre will shape the agenda for the meetings to ensure they are of maximum value to LCRNs. LCRN representatives are invited to put themselves forward to co-Chair meetings with the Coordinating Centre. LCRNs 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 Contract Support Page on Research Ready Communities. 

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

For further information about this programme, please refer to the Contract Support Page on Participant in Research Experience Survey 

For further information about this programme, please refer to the Contract Support Page on CRN PPIE Impact Framework 

We advise that LCRNs utilise their stakeholder relationships and Public Research Champions to reach out and test methods for engaging with at least two new areas within their region and try to boost sign ups for JDR (both for people diagnosed with dementia and members of the public). The impact of this work should be a demonstrable increase in JDR volunteer registrations (as shown via the ODP application). A suggested volunteer increase target for LCRNs is approximately a 10% increase per year.

Alternative methods to help achieve this target can include working together with colleagues from Research Delivery and in Partner 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

LCRNs are required to have a named JDR Lead to act as the primary contact for local and national JDR awareness-raising initiatives. They are also required to report JDR-related PPIE activities through the CRN PPIE Impact Framework. JDR Leads are encouraged to attend JDR national meetings and provide regular feedback to LCRNs about relevant JDR updates and activities.

To support the regional JDR Lead with promotion and awareness of the service, it is recommended that each LCRN nominates at least one JDR Public Research Champion, that is passionate and active within their LCRN about dementia research. 

JDR-related activities that are reported using the CRN PPIE Impact Framework include;

• Identification of a named JDR Lead;

• Identification of at least one JDR focussed Public Research Champion;

• Details of at least one activity per year demonstrating how your LCRN has engaged with stakeholders to increase registrations to JDR.

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. The CRN CC PPIE Impact Framework asks LCRNs to report on;

• How at least two Public Partners have contributed to a decision-making or strategic group within the LCRN – e.g. as a Board member or member of a funding panel; 

• An example of a role descriptions for Public Partners and/or Terms of Reference that clearly sets out the expectations of both the Public Partners and the LCRNs when undertaking PPIE activities at this level;

• Details of any relevant support and training offered to Public Partners to allow them to contribute effectively in their nominated tasks;

• How Public Partners are given the opportunity to evaluate their experience and mechanisms that LCRNs have to feedback impact of activities undertaken.

The CRN Coordinating Centre PPIE team can provide templates for role descriptions and PPIE Strategies as needed and provide support and guidance in the design of involvement structures. For reference, the NIHR has produced several guidance documents and resources;

• Information on involving the public in research;

• Payment guidance for researchers and professionals;

• Completing the feedback cycle;

• 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 strategy set out in our Going the Extra Mile report, with its vision of a population ‘actively involved in research to improve health and wellbeing for themselves, their families and their communities’.

LCRNs play a key role in helping meet this aim through strengthening our collaborations with people and communities, and extending the reach of CRN geographically and within under-served groups.

LCRNs are expected to support the work of CRN through the promotion of national PPIE opportunities and the recruitment of a diverse group of people on behalf of the CRNCC, across the NIHR, DHSC and as required by wider strategic partners.

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: crncc.ppie@leeds.ac.uk

Gary Cullen

Be Part of Research Service Manager

Email: bepartofresearch@nihr.ac.uk

Join Dementia Research    

Email: jdr.professionals@nihr.ac.uk 

BPoR: Be Part of Research

CRN: Clinical Research Network

CRNCC: Clinical Research Network Coordinating Centre

DHSC: Department of Health and Social Care

JDR: Join Dementia Research

LCRN: Local Clinical Research Network

NHS: National Health Service

NIHR: National Institute for Health and Care Research

POF: Performance and Operating Framework

PPIE: Public and Public Involvement and Engagement

PRES: Participant in Research Experience Survey

SEC: Stakeholder Engagement and Communications

WTE: Whole Time Equivalent 

Version number: 2.0 

Effective from date: 01 April 2023

Content revisions:

• Minor language updates throughout