Co-designing a social media and anxiety survey: reflections on the importance of centring mental health lived experience expertise

Introduction This study explores a collaborative co-design process undertaken with people with lived experience expertise (PLEE), to develop a survey investigating experiences of social media and anxiety. The research is the first step in a larger project across five countries (Australia, the United Kingdom, India, Canada and Singapore) that seeks to validate whether passive smartphone analytics and codesigned ethical protocols can underpin a scalable culturally inclusive AI chatbot that detects and mitigates anxiety based on smartphone use. Methods Through three iterative co-design workshops, conducted in Australia, facilitated by and involving people with lived experience of mental health conditions, insights were gathered on psychological, social, and structural mechanisms by which social-media use influences anxiety. Results Co-design workshop members strongly challenged the research team within five important themes: 1. Reframing Risk and Safety that involved ‘calling out’ disempowering and discriminatory language inherent in survey processes and existing validated measures; 2. Social Media as Both Harm and Haven that emphasised social media as both a source of anxiety and a lifeline for connection for this population; 3. Designing for Inclusion, Accessibility, and Safety to ensure survey usability and psychological safety for future participants; 4. Transparency, Power, and Representation to ensure lived experience involvement meant shared ownership, avoided tokenism, included First Nations leadership; and 5. Broadening the Lens – cultural, physical, and socio-economic factors involved urging a holistic view of the person and a systems view of anxiety and technology. Conclusion By involving people with mental health lived experience expertise in the design process, this study was able to co-create recommendations to strengthen the project’s survey design, ethical framework, and implementation plan. The co-design approach ensured the social media and anxiety survey met the specific needs of the target group and was trauma-informed; promoting trust, engagement and feasibility. Future research will focus on gathering insights from similar lived experience co-design workshops in the United Kingdom, India, Canada and Singapore to refine the AI Chatbot prototype and evaluating its effectiveness in a broader study. This study underscores the crucial role of mental health lived experience expertise in research that seeks to test digital solutions for people who experience anxiety exacerbated by social media use. Patient and Public Contribution People with lived experience of a mental health condition contributed throughout the design process. The co-design was led by a chief investigator with mental health lived experience who was a key member of the research team for the larger project. They led the reflexive thematic analysis, and writing and reviewing of the manuscript, in partnership with the co-design group members and the wider research team.