What users really need: insights from stakeholders on burden of disease data

Abstract Burden of Disease (BoD) data play a key role in evidence-based health advocacy. However, their utility hinges on effective translation and delivery formats suited to diverse user groups. With Germany's national BoD study transitioning to a permanent structure, understanding stakeholder needs is key to designing future outputs. This study explores how different users interact with BoD data and what structural elements best support their work. Building on international collaboration experiences, this study focused on in-depth, qualitative insights into BoD data use. It analyzed 18 semi-structured interviews with stakeholders from health policy, research, planning, and civil society. Interviews covered needs, barriers, and preferences regarding BoD data access and use. Transcripts were analysed using Notta App and NVivo, then thematically coded to identify shared patterns. The results informed a reflection process, aiming to shape a modular, user-centered reporting prototype. Three key themes emerged: customizability, contextualization, and accessibility. Users favored formats that allow tailored access-such as dashboards with parameter filters and AI-supported report generation. Linking BoD data to economic dimensions and enabling projections was seen as critical for relevance and communication-e.g. testing ‘what if’ scenarios like cutting smoking rates by 5% and instantly seeing changes in burden. Participants also emphasized the need for better navigation, transparent methodological assumptions, and a broader range of capacity-building and output formats, including interactive visualizations, infographics, and videos. Stakeholders expressed strong demand for tools supporting both strategic decisions and public communication. To increase the impact and uptake of BoD data, reporting structures must adapt to user needs. Modular, flexible formats that combine scientific rigor with contextual relevance and usability are key to fostering effective knowledge translation.