Developing involvement during a programme of recovery research
The Journal of Mental Health Training, Education and Practice
Article publication date: 12 September 2016
The purpose of this paper is to consider the process of working with a Lived Experience Advisory Group (LEAP) and its outcomes in REFOCUS, a large five-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. 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 pro-actively contributing to some aspects of REFOCUS in the later stages of the study.
The authors stress the importance of considering process as well as outcomes in patient and public involvement, 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.
The authors are grateful for the contribution of all LEAP members and its chair, for their commitment to the study and for their active contribution to understanding the impact of PPI on REFOCUS. This paper presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research (PGfAR) Programme (Grant Reference Number RP-PG-0707-10040), and undertaken at King’s College London in relation to the NIHR Biomedical Research Centre for Mental Health at South London and Maudsley NHS Foundation Trust and (Institute of Psychiatry, Psychology & Neuroscience) King’s College London. The project will be published in full in the NIHR PGfAR journal. The views expressed in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, MRC, CCF, NETSCC, the PGfAR programme or the Department of Health.
Slade, M., Trivedi, P., Chandler, R. and Leamy, M. (2016), "Developing involvement during a programme of recovery research", The Journal of Mental Health Training, Education and Practice, Vol. 11 No. 4, pp. 244-255. https://doi.org/10.1108/JMHTEP-01-2016-0006
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