General Information and guidance
- Starting our Guide - Why and how to get involved in research. This Starting Out Guide has been written to help and advise members of the public who would like to get involved, or have recently become 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’.
- Centre for Research in Public Health and Community Care: Useful, practical and evidence-based guidance for providing effective two-way feedback between researchers and public contributors.
- NIHR Learning for Involvement: Tips for carers to get and stay involved in health and care research
- Co-Production Collective: PPI and Ethics.
- Consumers United for Evidence: Series IV: How to Communicate Effectively on an Advisory Panel - YouTube
Other PPI training
- NIHR Learning for Involvement: Public Reviewers; raising research quality: an interactive course for new and experienced reviewers of health and social care research
- 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 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.
- To find out about clinical research more generally, you could take an online course ‘Improving Healthcare Through Clinical Research’ (University of Leeds and NIHR).
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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.
Webinar recordings
- NIHRtv: Reflections on impact & evaluation of public involvement: Who, Why & What?
- PPI Ignite: PPI in lab-based Research
Blogs
- MQ Mental Health Research: Shaping Research Through Lived Experience
Benchmarks for effective public involvement
- UK Standards for Public Involvement.
- Health Research Authority Shared Commitment to Public Involvement.
PPI Payment guidance
- NIHR have produced ‘Payment guidance for members of the public considering involvement in research’.
- 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).
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 13.09.23