About Public Involvement

What is public involvement in research?

Public involvement in research is 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.  Also included are people with lived experience of one or more health conditions, whether they’re current patients or not.  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.

Further information about public involvement is available on the NIHR website 

What public involvement in research is not

Researchers and others use different words to describe ways of interacting with the public. The terms involvement, engagement and participation are sometimes used interchangeably.

NIHR uses the following terms to distinguish between the different activities:

Involvement – an active partnership between patients, carers and members of the public with researchers that influences and shapes research.

Examples of public involvement are:

  • as joint grant holders or co-applicants on a research project
  • identifying research priorities
  • commenting and developing patient information leaflets or other research materials
  • undertaking interviews with research participants
  • user and/or carer researchers carrying out the research

Participation – where people take part in a research study.

Examples of participation are:

  • people being recruited to a clinical trial or other research study to take part in the research
  • completing a questionnaire or participating in a focus group as part of a research study

Find out more about participation in trials:

NIHR Be Part of Research

NHS Clinical Trials

Engagement – where information and knowledge about research is provided and disseminated.

Examples of engagement are:

  • science festivals open to the public with debates and discussions on research
  • open day at a research centre where members of the public are invited to find out about research
  • raising awareness of research through media such as television programmes, newspapers and social media
  • dissemination to research participants, colleagues or members of the public on the findings of a study

Find out more about engagement:

National Coordinating Centre for Public Engagement