General PPI information and guidance
- National Institute for Health and Care Research (NIHR): Briefing notes for researchers - public involvement in NHS, health and social care research
- UK Standards for Public Involvement: Resources to support researchers working towards the UK standards
- NIHR Oxford Biomedical Research Centre: Patient and public involvement (PPI) Researcher Guidance
- National Institute for Health and Care Research (NIHR): A practical guide to patient and public involvement in lab-based research
- NIHR Learning for Involvement: Tips for researchers involving unpaid carers in health and care research
- Healthtalk.org ‘Researchers' experiences of patient & public involvement’. You can find out about the experiences of health researchers of involving patients and members of the public in their research, by seeing and hearing people share their stories on film.
- NIHR: A guide to working effectively wth public contributors - by public contributors themselves
- 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.
- NIHR: How to involve the public in Knowledge Mobilisation
- NIHR: Involving Children and Young People as Advisors in Research
- Derek Stewart: 5 answers to improve 5 questions to improve Patient, Public Involvement in health research
Co-Production guidance
- NIHR Guidance for Co-Producing a Research Project
- NIHR Applied Research Collaboration West: A map of resources for co-producing research in health and social care
- 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.
PPI and Ethical practice
- Co-Production Collective: PPI and Ethics
- Imperial College London: Patient and Public Involvement trauma informed guidance for organisations and healthcare professionals.
- Public Involvement and Engagement in Scientific Research and Higher Education: the only way is ethics?
- NIHR Applied Research Collaboration North East and North Cumbria: Ethical Practice Guidelines for Public Involvement and Community Engagement
PPI and Ethics Applications
- Health Research Authority (HRA): Checklist for Applicants
PPI and Equality, Diveristy and Inclusion
- NIHR: Race Equality Framework
- INCLUDE: Better healthcare through more inclusive research
- National Disability Authority: Conducting Collaborative Research with with people with disabilities
- NIHR: Being Inclusive in Public Involvement in Health and Care Research
- NIHR tv: How to incorporate Equality, Diversity and Inclusion in Patient and Public Involvement
- Alzheimer Europe: Guidelines on Inclusive Travel and Meetings for People with Dementia
PPI training
- Complete our 'Building Research Partnerships' training to find out more about PPI in research.
- NIHR Learning for Involvement: Public Reviewers; raising research quality: an interactive course for new and experienced reviewers of health and social care research
- Clinical Research Facility Edinburgh: Bitesize Introduction to Patient Public Involvement - Bitesize Introduction to Patient Public Involvement (ed.ac.uk)
- Cochrane Training: Involving People: A learning resource for systematic review authors
- Trinity College PPI Ignite: PPI introductory module
- Health and Social Care Research Wales: UK Standards for Public Involvement one hour training package
- Public Involvement Training (Imperial College London): This online course will give you the skills and knowledge needed to get started with PPI in research
- Global Health Training Centre: An Introduction and Practical Guide to Community Engagement and Involvement in Global Health Research
Webinar recordings
- NIHRtv: Reflections on impact & evaluation of public involvement: Who, Why & What?
- Evidence Synthesis Ireland: Embedding Patient and Public Involvement (PPI) in medical education evidence synthesis
- NIHRtv: How to apply Public Involvement Effectively to your Research Application
- NIHRtv: How to implement a virtual programme for Patient and Public Involvement
- PPI Ignite: PPI in lab-based Research
- All Ireland Institute for Hospice and Palliative Care: PPI within the context of palliative care
- Trial Methodology Research Network: How to start a conversation with Public Partners about estimands. A practical tool
- NIHRtv: Exploring the interconnectedness between Patient and Public Involvement and Community Engagement and Involvement
Blogs
- MQ Mental Health Research: Shaping Research Through Lived Experience
- Dr Gary Hickey: Why should we measure the impact of Patient and Public Involvement?
- University of Bristol: Top 10 tips for improving diversity in research
Podcasts
- Applied Research Collaboration Yorkshire and Humber: An insight into being a public contributer
Advice for funding applications
- HRA guidance for Funding Applications - Top Tips for Public Involvement in Research
- HRA Best Practice Principles for Public Involvement
- Two PIER NI members have produced "Insights into PPI for Research Proposals" which you may find useful.
- Directory of Community Networks provides a list of organisations who may also be contacted to help you access people in the relevant area.
- Help with Lay Summary from the Plain English Campaign
- Cochrane: Consumer involvement – a guide for funding applications
- NIHR: Writing Plain English Summaries
- NIHR: Public co-applicants in research - guidance on roles and responsibilities
- NIHR: Definition and role of the designated PPI lead in a research team
PPI tools: Planning and Impact Assessment
- Public Involvement in Research Impact Toolkit (PIRIT): this consists of a planning tool and a tool to track the impact of public involvement activities within your research.
- Public Involvement Impact Assessment Framework (PiiAF)
- The Involvement Matrix
- Guidance on evaluating PPI in research.
- COMET Patient and Public Involvement Toolkit: This freely available Toolkit helps you plan for and undertake PPI in your core outcome set (COS) study.
- NIHR PPIE Planner: The PPIE Planner is designed to help researchers plan their PPIE activities.
PPI Payment guidance and tools
- NIHR Payment Guidance for Researchers and Professionals
- Health Research Authority: ‘Payment for public involvement in health and care research: a guide for organisations on employment status and tax’.
- Health and Social Care Northern Ireland: Service Users and Carers – Guidance on Reimbursement of Out of Pocket Expenses
- Budgeting for Involvement: cost calculator (an excel spreadsheet to help create a budget for PPI)
Benchmarks for effective public involvement
- UK Standards for Public Involvement.
- Health Research Authority Shared Commitment to Public Involvement.
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
- 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).
- Patient Experience Library: The Patient Experience Library puts a wealth of patient experience evidence in one place with free search and unlimited downloads.
- Public Involvement Front Door: The Public Involvement Front Door combines a values-based approach with practical tips and resources to open up the world of public involvement and empower researchers of all experience levels to meaningfully involve public members in their work.
Journal Articles/Publications
Examples of PPI Groups
- HSC R&D Division: Public Involvement and Enhancing Research (PIER)
- Northern Ireland Cancer Research Consumer Forum
- Herts Young People's Research Advisory group (YPAG) - watch this co-produced film to find out more
Examples of PPI Strategies and Plans
- 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
- NIHR Clinical Research Network North Coast: A Public Involvement and Engagment Plan
- British Heart Foundation Data Science Centre: Patient and Public Involvement Engagement Strategy 2024-2025
page last updated 06.12.24