THROUGH THE LOOKING GLASS: THE POTENTIAL OF RESEARCHER LIVED EXPERIENCE IN PSYCHIATRIC GENETICS

The importance of including lived experience perspectives in psychiatric research is being increasingly recognized. However, the potential contribution of researchers with lived experience is an important yet underdiscussed perspective. Typically, the groups of ‘researcher’ and ‘lived experience individual’ are separated in co-design frameworks, which inherently fails to recognize the possibility – and value – of researchers who have experienced the condition they are researching either personally or as a carer. In our recent paper, “From Genomes to Conversations: Outreach and Engagement in Psychiatric Genetics,” we highlighted how bidirectional engagement between researchers and those affected by psychiatric traits is key to conducting ethical and meaningful psychiatric genetics research. Researchers with lived experience of the condition they study are placed in a unique position to facilitate this bidirectional engagement, and it is essential that this facet of PPI is more frequently and openly addressed. In this presentation, I intend to address this space by discussing my own journey with anorexia nervosa and how, over the last 10 years, it has become intertwined with my work and identity as a scientist. I will detail how my lived experience: influenced me to become a psychiatric geneticist; informs my research practices; and has enabled me on multiple occasions to act as bridge between the two different groups. Following this, I will discuss some important considerations when being a lived experience researcher that I have come to recognize from my own journey, namely: prevailing stigma surrounding psychiatric conditions, even withing the psychiatric genetics space; burnout (blending of professional and personal lives to detrimental degree); and the pitfalls of generalizing and individual experience to a much wider group. Through this presentation, I hope to stimulate discussion around safely and ethically leveraging the perspectives of lived experience psychiatric geneticists as a powerful form of PPI. This is a very non-traditional presentation aimed at inspiring a new look at what PPI means in the context of psychiatric genetics and how it can be approached from numerous angles. At the end of the session, my goal is that attendees will have a better understanding of both the nuance and potential implicit in PPI beyond a ‘box to be ticked,’ and an appreciation of the uniqueness of every experience of a psychiatric condition and the fact that it occurs in the context of an equally unique life.