Citizen Science for Musculoskeletal Health Research: Identifying Patient-Led Research Priorities in Switzerland

Clara Gieseke Lopes (Epidemiology, Biostatistics and Prevention Institute (EBPI)), Nicole Bizzotto (Department of Communication and Media Research (IKMZ, Media Psychology & Methods) 

Musculoskeletal (MSK) disorders are a major global health burden and a leading cause of disability, healthcare utilization, and costs in Switzerland. To address these challenges, there is growing recognition that patient and public involvement (PPI), is essential for ensuring that research is relevant and aligned with what truly matters to those most affected by its outcomes. As a participatory research approach, PPI offers methods to meaningfully engage patients, the public, and other relevant knowledge users to address the underrepresentation of lived experience, priorities, and needs of individuals with MSK conditions in current research agendas. By exploring and identifying the research priorities of individuals living with MSK pain conditions in Switzerland, this project places patients at the centre of agenda setting to ensure future research and care are aligned with their real-world needs and priorities.

A diverse Citizen Science Board (CSB) of 40 to 60 individuals with lived experience of MSK pain conditions will be established. The CSB will engage in three workshops. In the first workshop, CSB members will share experiences and generate their key priorities. Given the high interest across the three main language regions of Switzerland (German, French, Italian), the first workshop will be conducted in person in each of the language regions to ensure linguistic and regional inclusivity. The generated priorities will be validated through a nationwide online survey distributed to a broadly representative MSK population. The survey results will be presented, discussed and revised in a second workshop. In the final workshop, the CSB will review and refine the findings, and reach consensus on the most important research priorities.

By moving towards authentic co-creation, this project aims to generate national evidence on what matters most to people living with MSK conditions in Switzerland. Importantly, these priorities will directly guide the development of a nationwide, population-based Swiss MSK Health Registry. The registry seeks to establish a long-term infrastructure that monitors epidemiological trends to support person-centered MSK research, and ultimately, to better address the needs of individuals living with MSK conditions in Switzerland.