Below is a list of useful links and resources for PPI advisors and anyone interested in public involvement in research.
Resources for Public Contributors
- 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
Resources for Researchers
- 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.
ARC WM PCIEP Research
- 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.
- Jargon Buster - a glossary of words containing the definitions of some of the terms commonly used in public involvement in research.