Public Involvement Resources

Here is a list of useful links and resources for anyone interested in public involvement in research.

Resources for Public Contributors 

  • Why and How to Get Involve in Research  - This Starting Out Guide has been written to help and advise members of the public who would like to get involved, or have recently become involved in research. In this guide you will find key information and principles about getting involved in research, whatever your experience or prior knowledge. 
  • I want to help with research | NIHR - What is Public Involvement in Research and how to get involved. 
  • Free Training Resources for Public Contributors 
  • Payment Guidance for Public Contributors This guide is for patients, carers and members of the public thinking about getting actively involved in research (see section 1 for definitions of these terms) and you are being offered expenses and/ or payment for your involvement. 
  • Easy Read Payment Guidance This is an Easy Read version of a guidance document aimed at patients, carers, service users and members of the public (in this document referred to as public contributors) being offered payment as part of their involvement in health and social care research.

Resources for Researchers 

Public Involvement Groups 

There are a number of research advisory groups that are well established and open to researchers visiting them to seek feedback and involvement opportunities. Here are some useful links to get started. 

Stevenage Dementia Involvement Group

Led by ARC EoE, the Stevenage Dementia Involvement Group aims to provide opportunities for people living with dementia, and their carers, to influence dementia research and the planning of local services.

Public Involvement in Social Care Research (PI-SoCR) Group

The Social Care Advisory Group was established in July 2022. It is facilitated by Shaping Our Lives in collaboration with the University of Hertfordshire. Shaping Our Lives are a user-led organisation specialising in the inclusive involvement of Disabled people and people from other marginalised communities. It aims to work with researchers to bring a lived experience perspective and voice to social care research studies by sharing their experience of social care research or of using social care services.

Children and Young People 

Herts Young Persons Advisory Group

We’re a group of children and young people aged 10-18 who live in Hertfordshire. We learn about research and work with researchers to help them plan and do research about children and young people’s health, care, family lives and the communities we live in. 

Young People Improving Research (Generation R)

A national organisation supporting a number of local initiatives. GenerationR Alliance Young People’s Advisory Groups (YPAGs) are funded by the National Institute for Health Research and/or NHS organisations through various channels. YPAGs support the design and delivery of paediatric health research in the UK. Some groups meet online and may be able to support research in the Eastern region virtually. 

CA:RING (Children and Adolescents: Research Involvement for the Next Generation)

CA:RING is a community designed to improve public involvement in healthcare research. Our community has over 200 members, which includes young people (aged 11 to 24) and parents, carers and guardians. We can offer a range of advice and support for researchers, including those who do not have much (or any!) experience with Patient and Public Involvement.


NIHR Cambridge Biomedical Research Centre

Coordinators can also assist with access to a panel of public volunteers for biomedical research projects (the Cambridge University Hospitals Patient and Public Involvement (PPI) Panel), with and without health conditions, who will share insight into their lived experiences, provide a public interest view point, review documents, join focus groups or comment on research proposals. 


The Cambridge Patient Led Research Hub (PLRH)

The Hub supports patient-led research, working in partnership with patient groups to deliver clinical studies based on their own research questions. The PLRH was established in 2015 by members of the Cambridge Clinical Trials Unit (CCTU) from the University of Cambridge and the Cambridge University Hospitals NHS Foundation Trust. We have expertise in the design and delivery of large and complex national and international clinical trials. Importantly, we do not have a specific research focus, allowing us to support research proposals from any patient group, on any topic.


The Cambridge and Peterborough NHS Foundation Trust(CPFT) Service User and Carer Research Group (SUCRG)

Involving service users and families with lived experience of mental health in developing research alongside researchers and clinicians. 

Email: r&


University of Essex School of Health and Social Care, Service User Reference Group (SURG)

SURG supports the teaching and governance arrangements at the school. Members consist of a diverse group of individuals. Members have expressed an interest in providing PPI input for research.



University of Hertfordshire Centre for Research in Public Health and Community Care (CRIPACC)
Public Involvement in Research Group  (PIRg)

PIRg adopts a ‘hub and spoke’ approach to membership and involvement.  The ‘hub’ is a permanent, centralised group with a core membership of around 15 people.  The ‘spokes’ utilise local users of services, and existing PPI groups and networks for specific projects.


Norfolk and Waveney & Suffolk 

Public and Patient Involvement in Research (PPIRes)

PPIRes supports a panel of 50 volunteers from Norfolk and Suffolk. Our volunteers work with researchers to deliver robust and ethical Patient and Public Involvement (PPI) in Primary Care, this includes research based in GP practices and community services. They contribute to developing the research idea and then can continue their involvement if a research study is funded.

PPIRes can help find and support volunteers and community groups to work with research teams to deliver funded research. It's essential that communities are well represented in the team to bring the patient, carer and public perspective to the research study.


Citizens Academy

The academy seeks to work collaboratively with existing structures for patient and public engagement and involvement (PPIE) not just across UEA, but also beyond, by collaborating and supporting the work of PPIE within trusts, voluntary organisations and charities that we regularly partner with. The Citizens Academy aims to provide a central ‘hub’ to bring together PPIE activities including recruitment of members, training resources, mentorship, and also taking a coordinated approach to aspects such as payment policy and good practice guidelines.



NIHR Centre for Engagement and Dissemination

The Centre brings together activities in patient and public involvement, engagement and participation with research dissemination. The aim is to further enhance the strong collaborative culture already established in involvement, engagement across the NIHR. Making health and care research findings informative, accessible, relevant and ready for use for all.

NIHR People in Research

Opportunities for public involvement in NHS, public health and social care research

Charity Involvement Directory

This includes links to the key contacts for the national charities who are members of the Shared Learning Group on Involvement in research ( These charities all support the active involvement of patients and carers in research. 

If you cannot find what you need, please contact our Public Involvement Lead, Bryony ( for further guidance. 

Reimbursement and Payment Guidance: 

Inclusive Involvement:

Useful Tools and Checklists:

Covid-19 Guidance:

Other useful resources:

Get in contact with us at if you have any useful resources we could add.