Embedding lived experience in mental health research: what we need to pack (and unpack) for the future in mental health research and translation.

Résumé

The incorporation of lived experience in mental health research has been a challenge for decades, pushing the boundaries of research to focus on the priorities of those most impacted. The people who should be the ultimate beneficiaries of research and its translation hold significant knowledge about both the topics of research and the way it should be respectfully conducted. However, despite policy, funding and most recently publishing directives that purport to support genuine lived experience-focused and -led research, progress remains slow, and debates are frequently still dominated by non-lived experience researchers in positions of power. In this paper, we explore some of the factors we need to consider to genuinely progress in mental health lived experience research, including restrictive and exclusionary thinking on authenticity, the ability to speak from multiple perspectives and the deeply personal intersections of experience in lived experience researcher identities. We then describe the ALIVE National Centre Embedded Lived Experience Research Model and an associated National Strategy for Lived Experience in Mental Health Research as responses to these pervasive issues.