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 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 how the research results are used in practice (implementation).

Play the video below to hear Expert by Experience Sarah Rae's story about being involved in research.

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 improve mental health services. It gives people using the services (and 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 meet new people.
  • These new experiences can help increase self belief and confidence in their own abilities, which often contributes to their ongoing recovery. 

What do people do when they are involved in research?

There are many ways that people can get involved. Tor example, they can:

  • Talk to researchers about their research ideas
  • Advise researchers about how they can make their research more user friendly and relevant
  • Help to develop information leaflets for people taking part in research that are easy to read and understandable
  • Help researchers to carry out research, such as by interviewing other service users
  • Become a member of a research advisory group and give a service user’s or carer’s perspective on a research project or issue
  • Review and provide comments on a research proposal
  • Help to share the results of 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 being involved in research?

Evidence and experience tells us that 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. Afterall, they have 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 are more relevant to service users and carers.

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

Giving people who receive mental health services the chance to be involved as researchers can also challenge the stigma that they are unable to do work like this or other kinds.

As a patient

As a patient, relative or carer using our services, sometimes you may need to turn to someone for help, advice, and support. 

Patient Advice and Liaison service  Contact the Trust