- Patient and Public involvement (PPI) in health research refers to research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them
- Involving young people in health research leads to better recruitment, dissemination and quality.
- Children and young people benefit from getting involved in health research.
- Children have a right to express their views in respect of research that affects them.
Key points
What is Patient and Public Involvement in health research?
Patient and Public involvement (PPI) in health research refers to research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them’ (NIHR INVOLVE). In other words, working with people with relevant lived experience in the design, delivery, and dissemination of research, as opposed to them being involved as research participants, i.e. sources of data.
Involvement can take many forms, for example:
- Helping to decide research priorities and questions
- Offering advice as members of an advisory or project steering group, the focus of this toolkit
- Acting as co-researchers (e.g. conducting interviews and focus groups, analysing data)
- Being involved in user-led research or co-production
Involvement can take place at all stages of the research process including:
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Prioritising research (what is important for young patients & their families)
- Reviewing funding applications for research projects
- Research design and the development of proposals
- Manage the research in partnership with researchers (for example, membership of a research steering committee)
- Data collection and analysis
- Reporting (for example, co-authoring reports or lay summaries)
- Share findings of research (for example, presenting at conferences or co-authoring journal articles).