Resources

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

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).
NIHR Payment Guidance for Members of the Public - This guide (published April 2021) is for patients, carers and members of the public thinking about getting involved in research and being offered expenses and/or payment for involvement. It offers answers to some frequently asked questions and suggests where you might get advice about your particular circumstances.
NIHR UK Standards for Involvement
NIHR INVOLVE Guidance on Co-Producing a Research Project
NIHR Going the Extra Mile - final report and recommendations of the strategic review of public involvement in the NIHR

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.

I Am Research campaign - giving patients, the public and health and social care research professionals a chance to shout about how fantastic research is. Aiming to raise awareness of the benefits of research and the positive impact it has on people's lives.
NIHR ‘Ok to ask’ campaign - a campaign encourage more patients or carers to ask about research opportunities that could be available to them or their loved ones, if they have a medical condition they are receiving treatment for. That essentially it is “OK to ask” about research opportunities.
NIHR ‘make it clear’ campaign - From 14 May 2014, a good quality plain English summary, submitted as part of the standard application form, will be a requirement of NIHR funding. Guidance has been developed for researchers and for board and panel members.

GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research

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.
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.