Australia - "It has to work for us" – Why lived experience matters in mental health tool design

Australia - "It has to work for us" – Why lived experience matters in mental health tool design New research in Spinal Cord highlights a powerful lesson for anyone developing health resources: expertise alone isn't enough. When a team of researchers created a Mental Health module for the Spinal Cord Injury Health Maintenance Tool, they built it on solid evidence and best-practice guidelines from academics and clinicians specializing in psychosocial adjustment. Then they shared it with people who actually live with SCI. 🧠 What changed The feedback transformed the resource. Four key insights emerged: → Mental health needed to be "front and centre" – the foundation for managing all other aspects of SCI, not an afterthought → They had to strike a balance – acknowledge serious challenges without drowning readers in negativity ("If I wasn't depressed, I might be after looking at this module") → A strengths-based approach was essential – showing the path forward, not just the problems → One size doesn't fit all – replacing "will" with "might" recognized that every person's journey is unique 🧠 The result A tool that's both evidence-based AND practically useful. One that normalizes mental health challenges while emphasizing personal agency and control. Lived experience isn't just valuable feedback – it's essential expertise. Without it, even the most well-intentioned resources risk missing the mark. For anyone developing health interventions: co-design isn't a box to tick. It's what makes the difference between a tool that sits on a shelf and one that actually helps people.