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 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.

Core Standards of the EUBIROD Project. Defining a European Diabetes Data Dictionary for Clinical Audit and Healthcare Delivery.

Background: A set of core diabetes indicators were identified in a clinical review of current evidence for the EUBIROD project. In order to allow accurate comparisons of diabetes indicators, a standardised currency for data storage and aggregation was required. We aimed to define a robust European data dictionary with appropriate clinical definitions that can be used to analyse diabetes outcomes and provide the foundation for data collection from existing electronic health records for diabetes.

Cross-border flow of health information: is 'privacy by design' enough? Privacy performance assessment in EUBIROD.

Background: The EUBIROD project aims to perform a cross-border flow of diabetes information across 19 European countries using the BIRO information system, which embeds privacy principles and data protection mechanisms in its architecture (privacy by design). A specific task of EUBIROD was to investigate the variability in the implementation of the EU Data Protection Directive (DPD) across participating centres.

Methods: Compliance with privacy requirements was assessed by means of a specific questionnaire administered to all participating diabetes registers.

Privacy impact assessment in the design of transnational public health information systems: the BIRO project.

Objectives: To foster the development of a privacy-protective, sustainable cross-border information system in the framework of a European public health project.

Materials And Methods: A targeted privacy impact assessment was implemented to identify the best architecture for a European information system for diabetes directly tapping into clinical registries. Four steps were used to provide input to software designers and developers: a structured literature search, analysis of data flow scenarios or options, creation of an ad hoc questionnaire and conduction of a Delphi procedure.

A networked electronic patient record system for diabetes.

This paper describes the development and clinical implementation of the SincroDiab--a synchronized diabetes register for the routine clinical practice in a LAN and for design of long-term trials and epidemiological studies based on the GEHR (Good European Health Record) architecture. The objectives of the SincroDiab system were to address the need to establish a more efficient and more effective information infrastructure to improve the ability to share patient record information among health care providers, to reduce the health care delivery costs, to meet the requirements of legal, regulatory or accreditation standards, to share comparable patients data among different sites within a multi-entity health care delivery system and to improve quality of care by network connecting the data repository to clinical workstations and departmental systems.