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Third sector facilitation of lived experience in research: a case study of service user and carer involvement in the PRIMROSE project

Benjamin Gray (Service User Expert, Rethink Mental Illness, London, UK)
John Larsen (Head of Research and Evaluation, Rethink Mental Illness, London, UK)
Alison Faulkner (Independent Service User Consultant, London, UK)

The Journal of Mental Health Training, Education and Practice

ISSN: 1755-6228

Article publication date: 16 September 2013




The physical health needs of people with mental health problems are currently under addressed and often ignored, both in training and in practice. The PRIMROSE trial intervention was designed to remedy that – focusing in particular on risk of cardiovascular disease (CVD). This paper describes how people with experience of using mental health services and carers contributed to the development of the PRIMROSE intervention. It draws out key messages for educators, researchers and practitioners.


Using a case study approach the paper outlines how a Third sector organisation supported the study team in setting up a Lived Experience Advisory Panel (LEAP), drawing on a pre-existing model and recent thinking about service user and carer involvement in research. It is described how the approach sought to engage wider involvement of people with an interest in CVD while also offering more focused input into specifically the development of the trial intervention.

Findings –

An innovative approach was taken whereby a large LEAP, comprising 27 service users and carers, was supporting the development of the study mainly through e-mail and web updates and feedback, while a sub-group of the LEAP, with eight members, met three times and had a focus on inputting ideas into the development of the intervention. The creation of a LEAP proved helpful to the project, resulting in an enhanced and more relevant intervention – summed up in a series of eleven recommendations. Appointment of an independent chair of the sub-group proved invaluable and there is learning from this project for other similar initiatives.


This study has value for others who are developing practice interventions. A range of suggestions were made which will have relevance for training, ensuring that physical health issues are not ignored. There is much to learn too from the process of this project, for the involvement of service users and carers in research, education and in practice development.



This paper presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Number RP-PG-0609-10156). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. This paper was written independently of the main PRIMROSE team. Special thanks to all the members of the LEAP as well as the PRIMROSE project team at University College London, including David Osborn, Alex Burton and Lou Atkins.


Gray, B., Larsen, J. and Faulkner, A. (2013), "Third sector facilitation of lived experience in research: a case study of service user and carer involvement in the PRIMROSE project", The Journal of Mental Health Training, Education and Practice, Vol. 8 No. 3, pp. 141-151.



Emerald Group Publishing Limited

Copyright © 2013, Emerald Group Publishing Limited

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