Patient / Participant Involvement

When should I involve participants in my research?

It is vital that participants are involved in your research as early as possible. To help you plan and undertake public involvement in your research we suggest you consider the following points:

  • involve people as early as possible
  • be clear with the people you want to involve
  • be accessible
  • resource public involvement in research
  • offer training and support
  • clarify organisational responsibilities
  • document and record public involvement in your research

To find out more information on Participant Involvement and Engagement go to the INVOLVE website

 

What is 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
  • identifying research priorities
  • as members of a project advisory or steering group
  • commenting and developing patient information leaflets or other research materials
  • undertaking interviews with research participants
  • user and/or carer researchers carrying out the research. 

 

What is 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.

 

What is 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.