Standardized information exchange in diabetes: integrated registries for governance, research and clinical practice

To fight diabetes effectively, there is a need for local action and global engagement. All potential stakeholders are relevant to collate complete data and using information to improve policy and practice on a daily basis. To realize it, substantial contribution is required by those who meet the diabetic patient regularly, monitoring the status and progression of the disease with better knowledge of the problem and at a lower cost per contact. As an integral part of a long term strategy, diabetes registers use information recorded at the point of care to improve quality of care through continuous monitoring of outcomes and prompt identification of subjects at increased risk of developing complications.Modern electronic diabetes registers substantially differ from simple electronic databases, as their role is at the core of a sophisticated network, where anything related to the condition of the individual can be measured with information on all the other levels of the health care system.In this chapter, we provide an overview of recent experiences in this field as well as challenges in the implementation of integrated registers, outlining roles and responsibilities of principal stakeholders and providing a snapshot of the best structure required to implement an integrated diabetes register.The chapter closes with a brief presentation of the relevant European legislation and the possible use of the recent achievements delivered by the EU-funded public health projects BIRO and EUBIROD. The conclusions underpin the importance to follow up all recent experiences concluded positively, with consistent initiatives aimed at engaging governments, health professionals and the whole community in the safe exchange of diabetes information, in the reciprocal interest.