BIRO

A validated privacy enhanced statistical platform for global diabetes monitoring: design and use of the BIRO system across nineteen European countriesFabrizio Carinci and Massimo Massi Benedetti on behalf of the EUBIROD ConsortiumAims. The integration of diabetes information is hampered by the scale of the problem (large population, multiple characteristics, technological infrastructure) and the increasing restraints imposed by privacy legislation. The BIRO system implemented in EUBIROD applied an evidence-based approach to construct a new tool using a distributed architecture for global public health monitoring.Methods. The BIRO system is an open source suite of programs written in Java, Postgres and R, running on a multi-platform virtual Linux machine that can be installed in any computer. Managers of diabetes registries agreed common criteria and used the system autonomously to process databases and generate reports locally. Aggregating routines were used to compute and transmit summary tables towards a coordinating centre. Multivariate logistic adjustment was included in the statistical engine. Same software uses aggregated tables from lower levels to produce regional, national and European reports.Results. The system has worked in real life conditions using live data managed by each centre. Outputs included data quality check of local data, frequency of missing values, tabular/graphic results of risk-adjusted quality and outcome indicators at both the local and global level. Reports are generated in PDF and web-enabled HTML format. The system fully complies with EU privacy legislation “by design” and is amenable to further development. A meta-registry was developed to classify data coverage, completeness and adoption of privacy principles in each centre.Discussion. The BIRO system has clearly proved to work in unique ways in EUBIROD. The latest version of BIRO completed the cycle from software install to report delivery in 19 countries within 13 days. It does not require commercial licenses and operates on different platforms with minimal machine requirements. An independent review conducted by the FP7 project EUROREACH recommended the EU: a) to adopt the BIRO technology and b) to extend its use to other diseases. Our experience showed that a distributed approach may represent a viable and efficient solution for global diabetes monitoring.Conclusion. The characteristics of the BIRO system (openness, statistical rigour, privacy enhanced, customisable and expandable) make it a natural candidate for the creation of a global information system for diabetes monitoring e.g. a fully standardized and automated IDF Diabetes Atlas.