FReSH’s presentation at the 17th DDI Users’ Conference focused on the challenges involved in reconciling the specific needs of the healthcare sector with international standards, such as the Data Documentation Initiative (DDI) standard. Rather than presenting a definitive solution, the aim of this presentation is to open up a space for discussion within the community on the application of DDI to health research and to identify possible avenues for interoperability and reusability.
Documenting data across the broad spectrum of health research disciplines
Documenting data across the broad spectrum of health research disciplines requires the management of a wide variety of nomenclatures, study protocols and reporting standards.
The ‘France Recherche en Santé Humaine ’ (FReSH) catalogue addresses this challenge by providing access to descriptions of data from scientific studies conducted in France, whether these are cohort studies, clinical trials, health-related social science surveys or registers, which raises significant complexities in terms of metadata harmonisation and interoperability.
After mapping existing initiatives and consulting with stakeholders, FReSH adopted the DDI Codebook standard as the basis for describing variables and study methodologies. The FReSH team engaged the research community through a series of workshops, which helped to identify users’ needs. This process revealed discrepancies between the structure and terminology defined in the DDI standard and the specific requirements of health research.
