Defining a European diabetes data dictionary for clinical audit and healthcare delivery: core standards of the EUBIROD project

Background: A set of core diabetes indicators were identified in a clinical review of current evidence for the EUBIROD project. Inorder to allow accurate comparisons of diabetes indicators, a standardised currency for data storage and aggregation was required.We aimed to define a robust European data dictionary with appropriate clinical definitions that can be used to analyse diabetesoutcomes and provide the foundation for data collection from existing electronic health records for diabetes.Methods: Existing clinical datasets used by 15 partner institutions across Europe were collated and common data items analysed for consistency in terms of recording, data definition and units of measurement. Where necessary, data mappings and algorithmswere specified in order to allow partners to meet the standard definitions. A series of descriptive elements were created to document metadata for each data item, including recording, consistency, completeness andquality.Results: While datasets varied in terms of consistency, it was possible to create a common standard that could be used by all. The minimum dataset defined 53 data items that were classified according to their feasibility and validity. Mappings and standardiseddefinitions were used to create an electronicdirectory for diabetes care, providing the foundation for the EUBIROD data analysis repository, also used to implement the diabetes registry and model of care for Cyprus.Conclusions: The development of data dictionaries and standards can be used to improve the quality and comparability of healthinformation. A data dictionary has been developed to be compatible with other existing data sources for diabetes, within and beyondEurope.