Developing involvement during a
programme of recovery research
Mike Slade, Premila Trivedi, Ruth Chandler and Mary Leamy
Mike Slade is based at the
School of Health Sciences,
Institute of Mental Health,
University of Nottingham,
Premila Trivedi is an
Independent Mental Health
Service User, Trainer and
Advisor based in London, UK.
Ruth Chandleris based at
Sussex Partnership NHS
Foundation Trust, Worthing, UK.
Mary Leamy is based at King’s
College London, London, UK.
Purpose –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.
Design/methodology/approach –Narrative reflections on the experience of working with LEAP were
collected from five members and the chair of LEAP, two REFOCUS researchersand 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.
Findings –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.
Practical implications –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.
Originality/value –This is the first empirical evaluation of user and carer involvement and its development
during a large recovery research programme.
Keywords Engagement, Recovery, Lived experience advisory panel, Patient and public involvement,
Process of involvement, Research programme
Paper type Case study
Patient and public involvement (PPI) is now an expected part of UK publicly funded health
research, and overviews of supporting evidence are available (Donald et al.,2015).An
increasing numbe r of reports are bein g published as to the i mpact PPI can have on
programmes of research (Brett et al., 2015; Staley, 2015). For example, a beneficial impact on
ethical aspects (INVOLVE, 2012) has been identified. While these evaluations provide
important informa tion, they may not tell the whole stor y of PPI since they tend to focus on the
outcomes of PPI but not necessarily on how and why these outcomes came about (Barber,
2008). Knowledge of these processes is vital if we are to really understand the often complex
process of PPI.
In this paper we investigate these processes, using as an example our experience of PPI in
REFOCUS. The REFOCUS programme was a large five-year programme of recovery funded
from 2009 to 2014 by the National Institute for Health Research (NIHR). The aim of the
programme was to increase the extent to which mental health services promote recovery.
The scientific content is described at researchintorecovery.com/refocus.
Received 28 January 2016
Revised 18 April 2016
Accepted 20 April 2016
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.
THE JOURNAL OF MENTALHEALTH TRAINING, EDUCATION AND PRACTICE
VOL. 11 NO. 4 2016, pp.244-255, © Emerald Group Publishing Limited, ISSN 1755-6228 DOI 10.1108/JMHTEP-01-2016-0006