INVOLVE defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking interviews with research participants.
When using the term ‘public’ we include patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services. Whilst all of us are actual, former or indeed potential users of health and social care services, there is an important distinction to be made between the perspectives of the public and the perspectives of people who have a professional role in health and social care services.
Researchers and others use different words to describe public involvement, for example words such as engagement and participation. In this publication when we use the term ‘public involvement’ we are not referring to researchers raising awareness of research, sharing knowledge or engaging and creating a dialogue with the public. We are also not referring to the recruitment of patients or members of the public as participants in research.
However, these different activities – involvement, engagement and participation – are often linked and although they are distinct can complement each other. For example, the public can and do play a valuable role in advising on recruitment of patients as participants and on ways of engaging with the public.
INVOLVE uses the following terms to distinguish between the different activities:
Where members of the public are actively involved in research projects and in research organisations.
Examples of public involvement are:
Where people take part in a research study.
Examples of participation are:
Find out more about participation in trials:
UK Clinical Trials Gateway
NHS Choices information on clinical research
Where information and knowledge about research is provided and disseminated.
Examples of engagement are:
Find out more about engagement:
National Coordinating Centre for Public Engagement