There are many different ways in which you can be a part of research, whether you want to be actively involved in the research or a participant.
Ways that you can take part include, 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 research with research participants.
The time you spend will also vary depending on the type of activity or role you are engaged in. See the ‘how to join in’ pages to find out more.
We define 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 we use the term ‘public’ we are including 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, such as engagement and participation.
We use the following terms to distinguish between the different activities:
Involvement – where members of the public are actively involved in research projects and in research organisations. Examples of public involvement are:
- as joint grant holders or co-applicants on a research project
- involvement in 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.
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.