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
Resources for Researchers
- 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.
- 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 to Coproduction (2018) – key principles
- NIHR UK Standards for Involvement
- NIHR Going the Extra Mile - final report and recommendations of the strategic review of public involvement in the NIHR
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.
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.
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.
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 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.
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.
The user group includes people who:
- Have experience of using social care services (either directly or for a family member or friend)
- Have experience of doing or taking part in research in social care
- Are Disabled people with long term health conditions and impairments, including people with learning disabilities
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.
Another list of links to established research advisory groups in the East of England.
If you cannot find what you need, please contact our Public Involvement Lead, Bryony (firstname.lastname@example.org) 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 2022 - This is the guidance followed by ARC East of England about how public contributors are reimbursed and also includes payment guidance.
- Centre for Engagement and Dissemination - Recognition payments for public contributors
- BAME 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.
Useful Tools and Checklists:
- The importance of feeding back to all those involved
- 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 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.