NMHCCF Perspective on the Lived Experience and Mental Health Research

13 March 2020

Discussion Papers

The NMHCCF has recently produced a discussion paper on the Lived Experience and Mental Health Research. This discussion paper gives an overview of the current state of play in mental health research involving consumers and families/ carers. It looks at trends in mental health research, research priorities from the point of view of people with the lived experience and the different levels of involvement.

Levels of Involvement

These levels of involvement reflect the ways people with lived experience are included in research:

As subjects of research, contributing their stories or points of view.
Consultation with mental health consumers and family members/ carers, make it clear that many participants recognise the importance of conducting mental health research and its role in improving services and outcomes. Consumers and carers often referred to the personal benefits of participating in research and, in general, referred to participation as a positive experience.

Working in collaboration with researchers.
Despite its challenges, genuine co-produced research projects have the potential to lead to innovative outcomes as well as help to break down barriers, stigma, and pre-conceived ideas about the potential of consumer researchers and the expertise consumer researchers can bring to the project.

Leading research.
The final word on consumers and carers leading mental health research must go to the people with lived experience. A group of lived experience researchers from American, Australian and UK universities assert that ‘if there was ever a moment when we, as a field, might take deeper stock of where we really want to head, it is arguably now. Involvement efforts are too often accompanied by empty promises, insufficient funding or commitment, and superficial gestures (e.g., membership on advisory boards), with no real power to set agendas, influence decision making, or bring about structural change.’