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001-es BibID:BIBFORM075575
Első szerző:Cunningham, Scott G.
Cím:Core standards of the EUBIROD Project : defining a European diabetes data dictionary for clinical audit and healthcare delivery / S. G. Cunningham, F. Carinci, M. Brillante, G. P. Leese, R. R. McAlpine, J. Azzopardi, P. Beck, N. Bratina, V. Bocquet, K. Doggen, P. K. Jarosz-Chobot, M. Jecht, U. Lindblad, T. Moulton, Ž. Metelko, A. Nagy, G. Olympios, S. Pruna, S. Skeie, F. Storms, C. T. Di Iorio, M. Massi Benedetti
Dátum:2016
ISSN:0026-1270
Megjegyzések: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. Methods: Existing clinical datasets used by 15 partner institutions across Europe were collated and common data items analysed for consistency in terms of recording, data definition and units of measurement. Where necessary, data mappings and algorithms were specified in order to allow partners to meet the standard definitions. A series of descriptive elements were created to document metadata for each data item, including recording, consistency, completeness and quality. Results: While datasets varied in terms of consistency, it was possible to create a common standard that could be used by all. The minimum dataset defined 53 data items that were classified according to their feasibility and validity. Mappings and standardised definitions were used to create an electronic directory for diabetes care, providing the foundation for the EUBIROD data analysis repository, also used to implement the diabetes registry and model of care for Cyprus. Conclusions: The development of data dictionaries and standards can be used to improve the quality and comparability of health information. A data dictionary has been developed to be compatible with other existing data sources for diabetes, within and beyond Europe.
Tárgyszavak:idegen nyelvű folyóiratközlemény külföldi lapban
data dictionary
standardised definitions
common dataset
interoperability
diabetes
Megjelenés:Methods of Information in Medicine. - 55 : 02 (2016), p. 166-176. -
További szerzők:Carinci, Fabrizio Brillante, Massimo Leese, Graham P. McAlpine, R. R. Azzopardi, Joseph Beck Péter Bratina, Natasa Bocquet, Valery (biostatisztikus) Doggen, Kris Jarosz-Chobot, Przemyslawa Jecht, Michael Lindblad, Ulf Moulton, Tony Metelko, Zeliko Nagy Attila Csaba (1981-) (megelőző orvostan és népegészségtan szakorvos, epidemiológus) Olympios, George Pruna, Simion Skeie, Svein Storms, Fred Di Iorio, Concetta Tania Massi Benedetti, Massimo
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001-es BibID:BIBFORM042452
035-os BibID:PMID:22562711
Első szerző:Di Iorio, Concetta Tania
Cím:Cross-border flow of health information : is 'privacy by design' enough? Privacy performance assessment in EUBIROD / Concetta Tania Di Iorio, Fabrizio Carinci, Massimo Brillante, Joseph Azzopardi, Peter Beck, Natasa Bratina, Scott G. Cunningham, Carine De Beaufort, Noemi Debacker, Przemyslawa Jarosz-Chobot, Michael Jecht, Ulf Lindblad, Tony Moulton, Želiko Metelko, Attila Nagy, George Olympios, Simion Pruna, Michael Røder, Svein Skeie, Fred Storms, Massimo Massi Benedetti
Dátum:2013
ISSN:1101-1262
Megjegyzések: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. Items included relevant issues e.g. patient consent, accountability of data custodian, communication (openness) and complaint procedures (challenging compliance), authority to disclose, accuracy, access and use of personal information, and anonymization. The identification of an ad hoc scoring system and statistical software allowed an overall quali-quantitative analysis and independent evaluation of questionnaire responses, automated through a dedicated IT platform ('privacy performance assessment'). RESULTS: A total of 18 diabetes registers from different countries completed the survey. Over 50% of the registers recorded a maximum score for accountability, openness, anonymization and challenging compliance. Low average values were found for disclosure and disposition, access, consent, use of personal information and accuracy. A high heterogeneity was found for anonymization, consent, accuracy and access. CONCLUSIONS: The novel method of privacy performance assessment realized in EUBIROD may improve the respect of privacy in each data source, reduce overall variability in the implementation of privacy principles and favour a sound and legitimate cross-border exchange of high quality data across Europe.
Tárgyszavak:Orvostudományok Egészségtudományok idegen nyelvű folyóiratközlemény külföldi lapban
külföldön készült közlemény
Megjelenés:European Journal of Public Health. - 23 : 2 (2013), p. 247-253. -
További szerzők:Carinci, Fabrizio Brillante, Massimo Azzopardi, Joseph Beck Péter Bratina, Natasa Cunningham, Scott G. Beaufort, Carine de Debacker, Noemi Jarosz-Chobot, Przemyslawa Jecht, Michael Lindblad, Ulf Moulton, Tony Metelko, Zeliko Nagy Attila Csaba (1981-) (megelőző orvostan és népegészségtan szakorvos, epidemiológus) Olympios, George Pruna, Simion Roder, Michael Skeie, Svein Storms, Fred Massi Benedetti, Massimo
Internet cím:Szerző által megadott URL
DOI
Intézményi repozitóriumban (DEA) tárolt változat
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