Table 1 Types of patient and public involvement and engagement and participation in research
Involvement | Examples | |
|---|---|---|
Consultation | Asking members for their views and using these views to inform decision making. | - Discussing research project ideas with patients and the public to find out how relevant they think the projects are. - Asking patient and carers to read, and provide feedback on, documents in the research design pathway. |
Collaboration/co-production | Where decisions about the research are shared between researchers and members of the public. | - PPI members collaborating with researchers to develop a grant application. - PPI members being involved with interviews with research participants for qualitative data collection. |
Patient-led | Where research is controlled, directed, and managed by service users and their service user organisations. | - PPI members as researchers on a project where they design, initiate, and deliver the research. |
Engagement | Where information and knowledge about research is provided and disseminated through a range of activities. | - Running a stall/exhibit at a science festival. - Giving a public lecture or talk to inform the local community. |
Participation | Where members of the public take part in the research study. | - Taking part in a clinical trial. - Completing a questionnaire for a research study. |