Setup of a Dutch system to collect diabetes care data

Issue. Collecting reliable data from different sources and turningthem into useful information for all interested parties is a longprocess that can be hampered by many obstacles. Dataroutinely collected at the point of care can be complex toshare due to insufficient interoperability of database systemsand restrictions imposed by privacy legislation. TheNetherlands is no exception to this problem.DescriptionThe Dutch system under development involves two tierslinking regional databases to the national coordinating centre.Each regional database sends individual data with a key to atrusted third party. This key can not be traced back to thesingle individual neither by the sender nor by the trusted thirdparty. The third party links diabetes data to other databases,creating a large scale datawarehouse, which can be used toconduct research in a secure framework. A national system isbuilt upon standards defined by the EU BIRO project. Itexports data from heterogeneous sources towards a commonformat maintained by different regional databases. Aggregatedata are transmitted to an international server for internationalcomparisons.ResultsZorgTTP (Zorg Trusted Third Party) has planned the keysystem, which will allow guaranteeing the highest levelof privacy protection. The BIRO system has been successfully tested on top of the Hoorn region diabetes database.Results will be presented at the Conference. Four moreregions will be included in 2010/2011, including primary carecentres.LessonsBest use of available ICT approaches can make real timenational/international benchmarking of chronic disease indicators a reality. The Dutch system merges innovative ideas thatfully respect National/European privacy laws and are extremely sustainable.