General Information and guidance
- NIHR Starting Out Guide - why and how to get involved in research.
- Patient and public involvement in research – Overview (healthtalk.org): find out about the experience of taking part in research as a patient or member of the public, by seeing and hearing people share their personal stories on film.
- Read National Institute for Health and Care Research (NIHR) ‘Public Information Pack (PIP): How to get involved in NHS, public health and social care research’.
- NIHR Learning for Involvement: Tips for carers to get and stay involved in health and care research
- Co-Production Collective: PPI and Ethics.
- Shaping our Lives: A guide for people who want to share their lived experience.
- Patient Advisors Network: Re-Imagining the Research Landscape. This is the story of research from the people who have chosen to share their lived and living experiences to impact research for the betterment of all as partners rather than as study participants.
- Service Users and Carers Checklist: What do I need to consider? What do I need to do?
Understanding Research Terminology
- Statistically speaking - a Plain English glossary of terms used in statistical methodology
- NIHR Glossary of research terms
PPI training
- Complete our 'Building Research Partnerships' training to find out more about PPI in research.
- Hosted by Queen's University Belfast: Getting involved in research: An introductory course.
- Public Involvement Training (Imperial College London): This online course will give you the skills and knowledge needed to get started with PPI in research
- The Involve Course (Public Health Agency): This online course will help understand more about PPI and how it makes a difference to Health and Social Care.
- The Irish Platform for Patient Organisations, Science & Industry IPPOSI patient education programme is designed to enable and empower patients and patient advocates to work effectively with Irish and EU-level health research & technology partners, agencies & authorities.
- Health Data Research and PPI: This training was developed to increase or refresh your knowledge, skills and confidence as a patient and public involvement (PPI) representative in Health Data Research and was developed by Crohn's & Colitis UK, Gut Reaction and PPI representatives working in partnership.
- Digital Badge: Public and Patient Involvement in Research. Course content is provided by academics and PPI contributors from across the national PPI Ignite Network, with some international contributors also.
Training to find out more about research
- To find out about clinical research more generally, you could take an online course ‘Improving Healthcare Through Clinical Research’ (University of Leeds and NIHR).
- Cochrane Evidence Essentials is an introduction to Evidence Based Medicine, clinical trials and Cochrane evidence. It is designed for healthcare consumers (patients, care givers, family members), policy makers and members of the healthcare team.
- Data Literacy Short course: McPin and DATAMIND with the help of the DATAMIND Super Research Advisory Group have created this short course to help people understand how the NHS uses and stores healthcare data.
PPI Webinar recordings
- NIHRtv: Reflections on impact & evaluation of public involvement: Who, Why & What?
- PPI Ignite: PPI in lab-based Research
- NIHR School for Primary Care Research: Using your experience to help others.
- Oxford Primary Care Patient and Public Involvement webinar: Finding and reading a research paper
- Oxford Primary Care Patient and Public Involvement webinar: Health Economics
- Oxford Primary Care Patient and Public Involvement webinar: An introduction to statistics
- Oxford Primary Care Patient and Public Involvement webinar: What is qualitative research
- Oxford Primary Care: Patient and Public Involvement Webinar - A philosopher's approach to equality
PPI Blogs
- MQ Mental Health Research: Shaping Research Through Lived Experience
- Involveddotblog: A blog by Derek C. Stewart
- Voices in Data: The power of of public involvement in data research
PPI Podcasts
-
Applied Research Collaboration Yorkshire and Humber: An insight into being a public contributor
Providing Advice and guidance as a public contributor
- NIHR Learning for Involvement: Public Reviewers; raising research quality: an interactive course for new and experienced reviewers of health and social care research
- Two PIER NI members have produced "Insights into PPI for Research Proposals" which you may find useful.
- How to review an application for research funding
- Derek Stewart: 5 answers to improve 5 questions to improve Patient, Public Involvement in health research
- Consumers United for Evidence: Series IV: How to Communicate Effectively on an Advisory Panel - YouTube
Benchmarks for effective public involvement
- UK Standards for Public Involvement.
- Health Research Authority Shared Commitment to Public Involvement.
- PEDRI Good Practice Standards for public involvement and engagement in data research
PPI Payment guidance
- NIHR have produced ‘Payment guidance for members of the public considering involvement in research’.
- Health Research Authority: 'Payment Guidance for Public Involvement in health and care research: a guide for members of the public on employment status and tax'.
- Health and Social Care Northern Ireland: Service Users and Carers – Guidance on Reimbursement of Out of Pocket Expenses
Useful Websites
- NIHR Learning for Involvement: This website is dedicated to learning and development for public involvement in health and social care research: what’s it all about and how to do it well. It brings public involvement information and resources (such as guidance, websites, videos, articles and blogs) and training together in one place.
- Health Research Authority: Public Involvement
- HSC R&D Division
- PPI Ignite Network: The PPI Ignite Network promotes excellence and inspires innovation in public and patient involvement (PPI) in health and social care research in Ireland.
- Engage: a website developed in partnership with staff, service users and carers designed to provide a wide range of information, guides and links to support Personal and Public Involvement (PPI).
- Co-Production Collective: The Co-Production Collective are a community of people with an interest in co-production. They support co-production in research, policy and healthcare practice.
- Patient Experience Library: The Patient Experience Library puts a wealth of patient experience evidence in one place with free search and unlimited downloads.
Publications
Examples of PPI Groups
- HSC R&D Division: Public Involvement and Enhancing Research (PIER)
- Northern Ireland Cancer Research Consumer Forum.
Examples of PPI Strategies
- HSC R&D Division Strategy for Personal and Public Involvement in HSC research
- Northern Ireland Cancer Trials Network: A strategy for Personal and Public Involvement in Cancer Research
- Manchester Biomedical Research Centre: Patient and Public Involvement, Engagement and Participation Strategy 2022-27
page last updated 26.08.25