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 Involved 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
- Short training videos about Patient and Public Involvement from Leeds Beckett University
- 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
- How to involve patients and the public in research - NIHR Guidance
- Researcher Feedback form - This feedback form can be used to evaluate the contribution and impact of the [PPI group] on research, access the Word document feedback form and Microsoft Form version in the link above.
- 4PI Involvement Experience Questionnaire - A self-reported questionnaire to help measure the experience of service users and carers in conducting involvement activities. Developed by a team of researchers and two patient and public involvement (PPI) coordinators and public members. The questionnaire is theoretically drawn on the 4PI National Involvement Standards (which encourage people to think of involvement in terms of: principles, purpose, presence, process and impact), and its development was informed by review of the literature, and feedback from experts in the field.
- A research handbook for patient and public involvement researchers – A really useful handbook This handbook is written for patients and members of the public who want to understand more about the approaches, methods and language used by health-services researchers. This book was developed during a five-year research programme funded by the UK’s National Institute for Health Research (NIHR) called Enhancing the Quality of User Involved Care Planning in Mental Health Services (EQUIP).
- A practical Guide to Being Inclusive in Public Involvement in Health - The Reaching Out programme was commissioned by INVOLVE in 2018 and this guide is based on learnings from these projects which aimed to support new or improved research partnerships and broaden involvement in research.
- NIHR Guidance for Co-Producing a Research Project
- Different experiences: A framework for considering who might be involved in research
- NIHR UK Standards for Involvement
- NIHR Going the Extra Mile - final report and recommendations of the strategic review of public involvement in the NIHR
- Involving children and young people as advisors in research
Checklist for Inviting Public Contributors to Events
We co-created a checklist with public contributors to ensure that key areas of information are covered when inviting public contributors to events. Keep information brief and clear. Available for download here. There are different and important considerations to be made when including children and young people in events. Specific guidance for involving Children and Young People is provided by Generation R.
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.
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.
Cambridge
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.
Email: ppi@addenbrookes.nhs.uk
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.
Email: plrh@hermes.cam.ac.uk
Involving service users and families with lived experience of mental health in developing research alongside researchers and clinicians.
Email: r&d@cpft.nhs.uk
Essex
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.
Email: surg@essex.ac.uk
Hertfordshire
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.
Email: s.prime@herts.ac.uk
Norfolk and Waveney & Suffolk
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.
Email: citizens.academy@uea.ac.uk
National
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.
Opportunities for public involvement in NHS, public health and social care research
This includes links to the key contacts for the national charities who are members of the Shared Learning Group on Involvement in research (http://slginvolvement.org.uk/). 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 (bryony.porter@cpft.nhs.uk) for further guidance.
Reimbursement and Payment Guidance:
- Payment Guidance for Researchers and Professionals - This guidance (published April 2021) provides information for researchers who need to cost public involvement activities at any stage of the research process.
Public Contributor Reimbursement Guidance - This is the guidance followed by ARC East of England about how public contributors are reimbursed and also includes payment guidance.
Inclusive Involvement:
- Increasing Participation of Black Asian and Minority Ethnic Groups in Health and Social Care Research Toolkit - This toolkit, developed by our colleagues in ARC East Midlands, captures best practice and provides researchers with a framework on how to improve the participation of Black and Minority Ethnic (BAME) groups in research.
- Improving inclusion of under-served groups in clinical research: Guidance from INCLUDE project | NIHR
- Safeguarding Statement from Co-Production Collective - a helpful view of ways to ensure everyone who takes part in involvement and engagement activity feels and is safe.
Jargon Busting:
- The Get-It Glossary - an online glossary of health research terms defined in plain English.
- Jargon Buster - a glossary of words containing the definitions of some of the terms commonly used in public involvement in research.
Covid-19 Guidance:
- COVID-19 and Co-production in Health and Social Care Research, Policy and Practice
- COVID-19 and Co-production in Health and Social Care Research, Policy and Practice: Volume 2: Co-production Methods and Working Together at a Distance
Other useful resources:
Get in contact with us at ARCoffice@cpft.nhs.uk if you have any useful resources we could add.