How to involve the public?
Members of the public should be involved across the who lifecycle of the research process. The image below developed by Louise Ting (Public Contributor) at ARC West, outlines the different ways the public might be involved across the research cycle.
Involving people in Advisory Groups:
- Working with a patient advisory group (Cancer Research UK)
- How to set up and organise a Young Person’s Advisory Group (GenerationR and eYPAGnet)
Involving people on Trial Steering Committees:
Involving people in virtual activities:
- How do I hold a PPI meeting using virtual tools? (NIHR SPCR, 2020)
- Virtual Patient and Public Involvement: A guide to video calling (NIHR, 2020)
- How to host an accessible online meeting (AbilityNet, 2020)
- How to Make Your Virtual Meetings and Events Accessible to the Disability Community (Rooted in Rights, 2020)
- How to Run Accessible Online Meetings for disabled people working and studying from home (AbilityNet, 2020)
Involving people as co-applicants:
- Public co-applicants in research – guide to roles and responsibilities (NIHR, 2021)
Involving people as peer researchers:
- Ten principles of peer research (The Young Foundation)
- Peer Research Training Resource (Patient Experience Research Centre, 2022)
Involving people in co-design activities:
- EBCD: Experience-based co-design toolkit (The Point of Care Foundation)
Co-producing research:
- Guidance on co-producing a research project (NIHR, 2021)
- A map of resources for co-producing research in health and social care (NIHR ARC West, 2020)
- Public involvement vs co-production: what’s the difference? (NIHR Research Design Service, 2021)
Participatory approaches to research:
- Participatory Action Research: A Toolkit (University of Reading, 2023)
- Participatory Research: Why and How to Involve People in Research (Sage Research Methods, 2020)
The way people are involved may also differ depending on the type of research being conducted and further guidance has been developed
Involving the public in Health Data Research
- Involving people and communities in digital services (NHSx)
- Building trust in data access through public involvement in governance (HDRUK, 2021)
Involving the public in Systematic Reviews & Evidence Synthesis
- Patient and public involvement in systematic reviews (Guidelines International Network, 2021)
For more methodological inspiration and practical guidance of how to involve people. You can visit the Action Catalogue (an online decision support tool developed as part of the Engage2020 project)