PPI Resource Library for Researchers

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
• 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.
• Derek Stewart: 5 answers to improve 5 questions to improve Patient, Public Involvement in health research

The UK Standards for Public Involvement

• UK Standards for Public Involvement
• Health and Social Care Research Wales: UK Standards for Public Involvement one hour training package
• HSC R&D Division: A guide to using the UK Standards for Public Involevment within PPI initiatives

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
• 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
• 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.
• Facilitating group discussions: free online course from OpenLearn

Subject specific PPI resources

• NIHR Learning for Involvement: Tips for researchers involving unpaid carers in health and care research
• NIHR Oxford Biomedical Research Centre: Planning Patient and Public Involvement in Surgical Trials 
• Alan Turing Institute: Resources for public involvement in AI
• University of Cork: PPI and lab-based research
• NIHR: A practical guide to patient and public involvement in lab-based research
• NIHR: How to involve the public in Knowledge Mobilisation
• Alzheimer Europe: Guidelines on Inclusive Travel and Meetings for People with Dementia
• National Disability Authority: Conducting Collaborative Research with people with disabilities
• Datacise open learnning: Navigating co-production and public involvement in research using data

PPI with children and young people

• NIHR: Involving Children and Young People as Advisors in Research
• Herts Young People's Research Advisory group (YPAG) - watch this co-produced film to find out more
• Barnardos Young Researchers: Guidance
• eYAPnet: The Generation R Alliance/eYPAGnet Toolkit will help you set up and run a Young Persons Advisory Group, allowing the voices of children and young people to be heard in research
• Centre for Community Child Health: Voice of the child

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.

Planning for PPI 

• Recommendations to more equitably share power on research teams that include patient/public partners
• Stroke Association: Toolkit - Involving people affected by stroke in your work and 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.
• Health and Care Research Wales: Guidance for recognising and addressing ineligible public involvement in health and care research

PPI Impact and evaluation

• 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.
• PPI Ignite: PPI Impact Framework
• Public Involvement Impact Assessment Framework (PiiAF)
• The Involvement Matrix
• PPI Impact Log: this log from People in Health West of England aims to capture the impacts of Patient and Public Involvement (PPI)
• AIIHPC Public and Patient Involvement (PPI) Impact Evaluation Framework: AIIHPC co-produced the framework with PPI contributors from AIIHPC’s Voices4Care and researchers from AIIHPC’s Palliative Care Research Network and Early Career Research Forum, in collaboration with the PPI Ignite Network at University College Cork
• GRIPP2 Reporting checklist for patient and public involvement

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. 
• Free guides 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
• Statistically speaking - a Plain English glossary of terms used in statistical methodology

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)

PPI and Equity, Diveristy and Inclusion

• NIHR - Varied Voices: How to make research more inclusive and diverse through public involvement
• NIHR: Supporting Equity and Tackling ineqaulity. How can NIHR promote inclusion in public partnerships?
• Health Research Charities Ireland and the Rare Disease Clinical Trials Network: A Friendly Guide to Equality, Diversity & Inclusion (EDI) in Public and Patient Involvement (PPI)
• NIHR: Race Equality Framework
• 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 
• Oxford Primary Care: Patient and Public Involvement Webinar - A philosopher's approach to equality
• Oxford Public Health, The Listening Series: Including everyone in public engagement in research. Guidance for Researchers​
• PHA Engage: Health Literacy resources
• Creating Connections, North East and North Cumbria Patient and Public Involvement and Engagement (PPIE) Network: Community Engagement Toolkit

PPI and working ethically

• 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
• Training resources for public contributors
• A list of training resources developed by HSC R&D Division to support your PPI contributors. 

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
• NIHR RSS Specialist Centre for Public Health: Learning Disability Inclusive Research

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
• Voices in Data: The power of of public involvement in data research

Podcasts

• Applied Research Collaboration Yorkshire and Humber: An insight into being a public contributer

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

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.

Examples of PPI Groups

• HSC R&D Division: Public Involvement and Enhancing Research (PIER)
• Northern Ireland Cancer Research Consumer Forum
• All Ireland Institute of Hospice and Palliative Care (AIIHPC): Voices for Care

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
• British Heart Foundation Data Science Centre: Patient and Public Involvement Engagement Strategy 2024-2025

Journal Articles/Publications

• Research Involvement and Engagement

• Making Research Matter: Steps to Impact for Health and Care Researchers

• Formalising the induction of patient and public involvement contributors on trial oversight committees.

• Asking patient partners/people with lived experience to provide input on a draft manuscript: Things to consider and some guidance

• Facilitating public and patient involvement in basic and preclinical health research | PLOS One

• Defining Patient and Public Involvement and Engagement Tasks in Health Data Research: A Consensus Study

page last updated 23.04.26