Reflections on my role as a mental health service user co-applicant in a randomized control trial

This is not a research paper but a personal and collective reflection of patient
and public involvement (PPI) for the LIGHTMind 2 randomized control trial
(www.isrctn.com/ISRCTN13495752). This trial compares two guided self-help
psychological interventions for depression, and is delivered in the UK NHS
Improving Access to Psychological Therapy services. The paper is the result of my
reviewing our PPI 18 months into the trial. The PPI includes myself as a research
team member and co-applicant, with lived experience of depression, mindfulness
and cognitive behaviour therapy. There is a Lived Experience Advisory Panel of
six people with lived experience of depression or mindfulness, who advise the
researchers. Two people with lived experience of mental health difficulties and
knowledge of PPI attend the Trial Steering Committee. This paper includes
comments from some of the other people with lived experience and from
researchers involved in the trial, included as co-authors.
I offer the Johari window (Luft, 1970) and the 4Pi National Involvement
Standards (NSUN, 2018) as a way of positioning the value of PPI. Developing
relationships within PPI is identified as a way of moderating the fear that some
people experience as they work with researchers. I describe the importance of
principles that incorporate explicit statements about the value of PPI.