Integrating national health data into the NEED database: bridging gaps for evidence-based policy

Abstract Reliable and comprehensive data are essential for identifying unmet needs and informing research and policy priorities. The NEED (Needs Examination, Evaluation and Dissemination) database is built on a framework of 26 criteria and 46 indicators to assess unmet health-related needs for patients and society. Currently, the database includes Crohn's disease, melanoma, and long COVID. To support its expansion, this study explored the integration of Belgian data sources into the NEED database and identified key data gaps. A two-step approach was used. First, relevant public and institutional databases were identified through a structured search, focusing on those providing estimates for at least three indicators across multiple conditions. Second, data sources were critically appraised for availability, accessibility, and methodological compatibility with the NEED framework. Six national sources were reviewed. The Belgian National Burden of Disease study, the Cancer Registry, and the Rare Disease Registry showed strong potential for epidemiological and quality-of-life indicators. However, gaps remain in healthcare and social domains, and challenges include limited access and inconsistent methodology. Improving data comparability across diseases and domains is vital to enable robust, comprehensive assessments of unmet needs at national and European levels.