Patient and public engagement and involvement (PPIE) learning: training and resources for researchers
PPI knowledge building
Our PPIE Team is available to support researchers in learning more about PPIE and in developing knowledge and skills in areas such as conversation facilitation and evaluation and surveys. You can contact us at email@example.com to find out more.
Our Moorfields BRC currently provides an introductory module on PPIE for all core staff at the Moorfields via Insight and all staff at the Institute of Ophthalmology through UCLExtend. This is a free on demand course, you just need to register.
We align all our PPIE to the UK Standards for Public Involvement.
Knowledge building courses
Build your PPI knowledge by taking one of our or our partners courses:
NIHR Moorfields Biomedical Research Centre Introduction to Patient - Public Involvement - Open to staff at UCL and Moorfields: This is a free on demand course, you just need to register
NIHR UCLH Biomedical Research Centre's PPI training programme - Open to researchers from organisations in the UCLPartners Academic Health Science Partnership, which includes UCL and Moorfields
UCL School of Life and Medical Sciences Community of Engagers - A community of practice for those working in PPI and public engagement across the school, with termly face-to-face meetings
NIHR - Learning for Involvement website - Search for new learning resources, training sessions and find information about training providers
Public Reviewing with the NIHR - Co-produced online course for public reviewers of health and social care research. Researchers may find this resource useful when writing research funding applications. It can be used as a tool to understand how to get your Patient and Public Involvement right first time
The following resources will help you in planning for PPIE at the earliest stages of your research design and development.
It is important to identify and work with an appropriate cross section of patients and public partners to identify the 'right' research question and to establish an acceptable research design with clear, relevant outcomes. PPIE is most effective when clear expectations are laid out from the outset, when roles and responsibilities are clarified and relevant training and skills development is provided. Budgeting for PPIE at the beginning and building in appropriate reimbursement/recognition for people's expenses, time to take part, skills and experience will help support broader involvement and more equal partnerships.
NIHR Learning for Involvement - Briefing Notes for Researchers
Centre for Excellence on Partnership with Patients and the Public
Patient Focused Medicines Development: Patient Engagement Guidance
Example journals publishing PPI-related work:
PPI impact evaluation and reporting
Why do/should people get involved in research?
What does patient and public involvement in research look like?
Responsible Research and Innovation - Involving society in science and innovation to align outcomes with social values
Parkinson's UK - Patient and Public Involvement: a resource for researchers
Dean, S et al. "The Patient is Speaking": discovering the patient voice in ophthalmology. Br J Ophthalmol. 2017;101(6):700-8
Shared Learning Group on Involvement in Research - Involving people in laboratory-based research
Starting from a patient-centric question in ophthalmology research
Putting patients at the centre of your study design
NIHR - Role descriptions and terms of reference for working with patients and publics
NIHR - Improving inclusion of underserved groups in clinical research
Making research accessible for patients and the public
European Patients' Academy (EUPATI) - Toolbox on medicines development for patient advocates
NIHR - Writing in plain English for non-scientific audiences
Patient Information Forum - How to guides to present clear and accessible information for patients
UK Association for Accessible Formats - Creating clear reading material
Kaczmirek, L et al. Survey design for visually impaired and blind people. Universal Access in Human Computer Interaction. Part I, Coping with Diversity. Berlin: Springer, 2007 pp. 374-381
Feeding back on your research findings
NHS Health Research Authority - Sharing research findings with study participants
NIHR CLAHRC East of England - Feedback from researchers to PPI contributors
Mathie, E et al. Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study Health Expect. 2018;21:899–908