Sarah Rae, Service User Advisor
Click above to listen to Sarah speaking about her experience of being involved in research

What is service user and carer involvement in research?

Service User and Carer Involvement in Research is often called Patient and Public Involvement or PPI. This describes the close partnership working between service users, carers, and researchers during different stages of the research process.  Many people define public involvement in research as doing research ‘with’ or ‘by’ the public, rather than ‘to’, ‘about’ or ‘for’ the public.  When service users and or carers take part in research, it’s extremely valuable but this is not the same as being ‘actively’ involved.

“Active involvement” means working together with researchers to help make decisions about what type of research should take place; what questions are asked; how the research is done; what the results mean; and the use of results in practice.

What people do as part of their involvement?

There are many ways that people can get involved, for example:

  • They can talk to researchers about their research ideas
  • They can advise researchers about how they can make their research more user-friendly
  • They can help to develop information leaflets for people taking part in research that are easy to read and understandable
  • They can help researchers to carry out research, for example interviewing service users
  • They can become a member of a research advisory group and giving a service user’s or carer’s perspective on a research project or issue
  • They can provide comments on a research proposal
  • They can help  to share the results of a research with other service users and the public

Every project is different. Involvement can be a one-off consultation or it can be an ongoing collaboration.

What are the benefits of ‘active involvement’ in research?

There is some evidence and experience that tells us involvement of service users and carers can add value at all stages of the research process. It is the service user and carer perspective that brings benefits.

People who have been affected by mental health issues often have a unique understanding of the key issues as a result of having lived experience. They see things in a different way, which gives the researchers a greater insight into mental health issues and the way their research will affect the community. In this way they can help ensure that research is more relevant to clinical practice and the results more relevant to service users and carers.

Service user and carer involvement can also generate interest in Research and Development (R&D) activity and joint research projects amongst service users, carers and staff. It also enables the Trust to focus on service user and carer values.

Involving people who receive mental health services as researchers can also challenge the stigma that these people are unable to do work of this or other kinds.

Why do people get involved as a service user or carer researcher?

People get involved in research for many different reasons. Some people decide to get involved because:

  • this is a positive way to use their experience to help to improve mental health services and gives others who use the services (ie. those taking part in the study) an opportunity to have their views heard.
  • it can make them feel valued and part of the picture and can even increase their sense of ‘empowerment’ and self-esteem.
  • they would like to gain experiences, new skills and training which can lead to other opportunities and meeting new people.
  • these new experiences can help increase self belief and confidence in their own abilities which often contributes to their on-going recovery. 

The page was last updated on 12 August 2015 by aji.kuriakose.

Cambridgeshire and Peterborough NHS Foundation Trust
Elizabeth House, Fulbourn Hospital
Cambridge, CB21 5EF

T 01223 219400 (open 8:30am to 5pm)
F 01480 398501

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