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Participation, Engagement and Involvement

What's the difference between them?

Confused about the difference between Participation, Engagement and Involvement? More information can be found on the Involve website 

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Participation by patients and the public

Patient and Public 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

 

Examples of participation in the CLIMB project

  • More patients able to sign up for the research database through awareness and easier use

  • Expansion of CamCOPS (electronic data capture tools e.g. electronic psychiatric tests and assessments), making participation in studies easier and less time consuming

  • Participation to validate the CamCOPS tools

  • Development of the Mood and Joint Immunopsychiatry (MOJO) study: A study of inflammation and depression in patients with rheumatoid arthritis, ankylosing spondylitis or Sjogren’s syndrome

  • Allowing participants' data from previous studies to be linked to the research database

Engagement with patients and the public

Patient and Public 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.

  • Research open days 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 programs, newspapers and social media

  • Dissemination to research participants, colleagues or members of the public on the findings of a study

 

Examples of engagement in the CLIMB project

  • Stand and poster at Brainworks: An open evening for the public hosted by NIHR Cambridge BRC

  • Presentation at the Service user and carer research network meeting ‘using data in mental health research’

  • Presentation on mental health data at the CPFT research nurse’s supervision meeting

  • Engagement with clinicians and nurses working in mental health research

Involvement of patients and the public

Patient and Public Involvement – where members of the public are actively involved in research projects and in research organisations.

 

Examples of involvement are:

  • As joint grant holders or co-applicants on a research project

  • Involvement in identifying research priorities

  • Commenting on and developing patient information leaflets or other research materials

  • Undertaking interviews with research participants

  • Joining a research advisory group

  • User and/or carer researchers carrying out the research

 

Examples of involvement in the CLIMB project

  • Set up of a CLIMB project research advisory group (RAG)

  • Enabling patient led research – project in process

  • Assisting the MOJO study team with document reviews and project oversight

  • Making it easier to ask research questions by the ongoing development of data visualisation tools in the research database

  • Involvement by Service users and carers in the research database oversight committee

  • Focus group on data sharing (in set up)

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