From Patient to Partner
- Jason Grant-Rowles
- Aug 14
- 4 min read
The path through mental illness can be isolating, disorienting, and equally profoundly transformative. For those of us who have navigated the complexities of psychosis, crisis care, and prolonged interventions, the search for understanding, community, and meaning becomes real.
It was this very search that led me into the world of Patient and Public Involvement (PPI) – a realm where lived experience is not just acknowledged but actively embraced as an invaluable asset in shaping the future of mental health research. Recently, I have started a PhD Studentship in Patient and Public Involvement and Engagement funded by the NIHR Maudsley Biomedical Research Centre at King’s College London. I am investigating how to improve the informed consent process for people with a diagnosis of schizophrenia to participate in clinical trials.
Before this PhD, my own path into PPI began after a period of intense mental distress, including psychosis and involuntary hospitalisation, followed by three years within an Early Intervention Service. I desperately sought ways to comprehend my “unusual experiences” and connect with others who had walked a similar path.
Fortuitously, my local mental health trust ran an active "expert by experience" programme. This initiative was a lifeline, offering opportunities for patients and carers to engage in various activities: meetings, focus groups, quality and safety reviews, and even interview panels. Crucially, there was a dedicated research involvement programme, where I joined the psychosis research theme group.
Here, I began to advise researchers on their ideas, development, and applications for funding their research projects. This created a step into a world that would soon become central to my advocacy.
Since those initial days, my involvement in research has expanded exponentially, touching institutions across the UK, including Sussex, Kent, Surrey, Manchester, Sheffield, Nottingham, Bristol, Oxford, Cambridge, City, UCL, and King's College London.
Beyond those institutional boundaries, I've contributed to national advisory boards, regional health organisations, and even global mental health startups. This extensive engagement has solidified my belief that PPI is not merely an optional add-on, but an indispensable component of meaningful research.
From my vantage point, PPI brings an unparalleled value to mental health initiatives, particularly within programmes like the Mental Health Implementation Network (MHIN). We inject a crucial understanding of the lived reality for individuals grappling with mental illnesses. More than that, we offer fresh perspectives and innovative ways of seeing things, drawing directly from those most impacted by the issues under investigation.
My early involvement on the MHIN advisory board allowed me to sense-check ideas, contribute to discussions, and serve as a "critical friend" to the executives. This direct access to the highest levels of decision-making within the programme has been vital. It enabled me to contribute to idea generation and topic selection for systematic reviews, and to work collaboratively with colleagues to humanise various aspects of the work – ensuring that the science remains grounded in the human experience it aims to understand and improve.
As the PPI Lead for MHIN, I've had the privilege of working at a strategic level to shape and influence the programme's extension. My impact has been tangible. For instance, I suggested incorporating "career conversations" into the mentoring offer, shifting the focus from general guidance to specific professional development for mentees. Another impactful suggestion was to replace traditional conferences with "celebration events." This subtle but significant change encourages colleagues to bring their positive selves which fosters a more upbeat and engaging atmosphere for presentations and knowledge exchange. These seemingly small contributions have helped to create a culture of collaboration, recognition, and genuine engagement.
Lived experience brings a depth of insight that theoretical knowledge alone cannot replicate, highlighting practical challenges, overlooked nuances, and the true priorities of those who navigate mental illness daily.
Furthermore, PPI significantly aids in the dissemination of research findings to the public. Most PPI members are well-connected within their personal and professional networks, allowing research findings to reach audiences that academics might not typically access. This organic dissemination is invaluable for bridging the gap between scientific discovery and public understanding, ensuring that research benefits the widest possible community.
Creating a culture that truly embeds lived experience in research requires conscious and concerted effort. Several key steps are necessary.
Firstly, accessible training opportunities for individuals interested in PPI and lived experience research are essential. This equips individuals with the necessary skills and understanding to contribute effectively. Secondly, fostering knowledge exchange through articles, events, and conferences that showcase lived experience contributions is crucial for validating and celebrating their impact. Thirdly, adequate and transparent funding for PPI activities is non-negotiable. This includes covering practical costs such as internet access, childcare, travel, and, critically, fair remuneration for people's time. PPI members need to understand precisely how their contributions will be utilised and how they will make a tangible difference to the overall research programme. Lastly, and perhaps most importantly, there must be proper acknowledgment of people’s contributions. This means crediting individuals on websites, in presentations, naming them in publications, and formally acknowledging their input in any end-of-programme activities.
In essence, embedding lived experience within research is not just about ticking a box; it’s about enriching the research process, humanising its objectives, and ultimately, ensuring that scientific advancements translate into meaningful improvements in the lives of those they are intended to serve. It's about recognising that the expertise gained through navigating mental illness is valuable and that true progress in mental health research hinges on this profound collaboration between the research community and members of the public.
