Making use of comparable health data to improve quality of care and outcomes in diabetes: the EUBIROD review of diabetes registries and data sources in Europe

Background: Registries and data sources contain information that can be used on an ongoing basis to improve quality of care and outcomes of people with diabetes. As aspecific task of the EU Bridge Health project, we carried out a survey of diabetes-relateddata sources in Europe.Objectives: We aimed to report on the organization of different sources of diabetesinformation, including their governance, information infrastructure and disseminationstrategies for quality control, service planning, public health, policy and research.Methods: Survey using a structured questionnaire to collect targeted data from anetwork of collaborating institutions managing registries and data sources in 17countries in the year 2017.Results: The 18 data sources participating in the study were most frequently academiccentres (44.4%), national (72.2%), targeting all types of diabetes (61.1%) covering no Q18more than 10% of the target population (44.4%). Although population-based in over aquarter of cases (27.8%), sources relied predominantly on provider-based datasets (38.5%), fewer using administrative data (16.6%). Data collection was continuous in themajority of cases (61.1%), but 50% could not perform data linkage. Public reports weremore frequent (72.2%) as well as quality reports (77.8%), but one third did not providefeedback to policy and only half published ten or more peer reviewed papers.Conclusions: The heterogeneous implementation of diabetes registries and data sources hampers the comparability of quality and outcomes across Europe. Best practices exist but need to be shared more effectively to accelerate progress anddeliver equitable results for people with diabetes.