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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

Frontiers in Clinical Diabetes and Healthcare(2021)

Univ Bologna | Univ Med Ctr Ljubljana | Univ Dundee | Croatian Inst Publ Hlth | Larnaca Hosp Cyprus | Univ Malta | Sciensano | Univ Debrecen | Haraldsplass Deaconess Hosp | Med Univ Silesia | Silesian Tech Univ | Telemed Consulting | Univ Oxford | St Anna Hosp Ferrara | Assoc Med Diabetol AMD | Robert Koch Inst | Minist Hlth | Ctr Dis Prevent & Control Latvia | Steno Diabet Ctr Copenhagen | Finnish Inst Hlth & Welf THL | Univ Gothenburg | Serectrix snc | Int Diabet Federat European Reg | Amsterdam Publ Hlth Res Inst

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Abstract
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 a specific task of the EU Bridge Health project, we carried out a survey of diabetes-related data sources in Europe. Objectives We aimed to report on the organization of different sources of diabetes information, including their governance, information infrastructure and dissemination strategies for quality control, service planning, public health, policy and research. Methods Survey using a structured questionnaire to collect targeted data from a network of collaborating institutions managing registries and data sources in 17 countries in the year 2017. Results The 18 data sources participating in the study were most frequently academic centres (44.4%), national (72.2%), targeting all types of diabetes (61.1%) covering no more than 10% of the target population (44.4%). Although population-based in over a quarter of cases (27.8%), sources relied predominantly on provider-based datasets (38.5%), fewer using administrative data (16.6%). Data collection was continuous in the majority of cases (61.1%), but 50% could not perform data linkage. Public reports were more frequent (72.2%) as well as quality reports (77.8%), but one third did not provide feedback to policy and only half published ten or more peer reviewed papers during the last 5 years. 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 and deliver equitable results for people with diabetes.
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diabetes,diabetes registries,quality of care,performance indicators,risk adjustment,health information
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要点】:本文综述了欧洲各地糖尿病登记和数据源的组织开展情况,发现实施异质性阻碍了质量与结果的比较,强调了最佳实践共享的必要性。

方法】:通过结构化问卷对17个国家的协作机构进行调研,收集糖尿病登记和数据源的相关信息。

实验】:研究使用的数据集为2017年17个国家18个数据源的信息,结果显示数据源以学术中心和国家级为主,覆盖人群比例有限,且数据连续性较好但数据关联能力不足。