Challenges in documenting health research data using the DDI standard

Documenting data across the wide spectrum of health research disciplines requires dealing with a diversity of nomenclatures, study designs, and reporting standards. The “France Recherche en Santé Humaine” (FReSH) catalog addresses this challenge by providing access to descriptions of individual data from scientific studies in France, covering cohort studies, clinical trials, health-related social sciences surveys, and registries, raising significant complexities in terms of metadata harmonization and interoperability. After identifying ongoing initiatives and engaging with stakeholders, FReSH adopted DDI Codebook standard as a founding for describing variables and study methodologies. The FReSH team engaged the research community through a series of workshops, which made it possible to collect user needs. This process made it possible to identify discrepancies between the structure and terminologies defined in DDI and the specific needs of health research. The presentation will focus on the challenges encountered in balancing domain-specific needs with international standards, and on the implications for harmonization and reuse of metadata. Rather than presenting a finalized solution, the goal is to open a space for discussion within the community about applying DDI in health research and identifying possible paths forward for interoperability and reusability.