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Developing involvement during a programme of recovery research

Slade, Mike; Trivedi, Premila; Chandler, Ruth; Leamy, Mary

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Professor of Mental Health Recovery and Social Inclusion

Premila Trivedi

Ruth Chandler

Mary Leamy



To consider the process of working with a Lived Experience Advisory Group (LEAP) and its outcomes in REFOCUS, a large 5 year programme of recovery research.


Narrative reflections on the experience of working with LEAP were collected from five members and the Chair of LEAP, two REFOCUS researchers and the Principal Investigator (PI). These were synthesised to show both the process and outcomes of LEAP involvement in REFOCUS, and how involvement evolved organically over time.


Individual reflective accounts showed how working with LEAP impacted (to a greater or lesser extent) on each individual involved in the process, providing new insights and influencing, to varying degrees, the way in which they then worked with LEAP. Synthesis of the reflections showed how these changes impacted organically on LEAP's process of involvement, with a shift in LEAP's role from being purely consultative/advisory towards one which was much more about co-production, with LEAP proactively contributing to some aspects of Refocus in the later stages of the study.

Practical implications

We stress the importance of considering process as well as outcomes in Patient and Public Involvement (PPI), and make practical recommendations for improving both in future programmes of research.


This is the first empirical evaluation of user and carer involvement and its development during a large recovery research programme.

Journal Article Type Article
Acceptance Date Apr 20, 2016
Online Publication Date Sep 12, 2016
Publication Date Sep 12, 2016
Deposit Date Aug 8, 2016
Publicly Available Date Sep 12, 2016
Journal Journal of Mental Health Training, Education and Practice
Print ISSN 1755-6228
Electronic ISSN 2042-8707
Publisher Emerald
Peer Reviewed Peer Reviewed
Volume 11
Issue 4
Pages 244-255
Keywords patient and public involvement, research programme, recovery, lived experience advisory panel, process of involvement
Public URL
Publisher URL


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