title: Cross-border flow of health information: is 'privacy by design' enough? Privacy performance assessment in EUBIROD.
abstract: 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. 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.
authors.affiliation: Serectrix snc, Pescara, Italy. ct.diiorio@serectrix.eu
authors.forename: Concetta Tania
authors.initials: CT
authors.lastname: Di Iorio
authors.forename: Fabrizio
authors.initials: F
authors.lastname: Carinci
authors.forename: Massimo
authors.initials: M
authors.lastname: Brillante
authors.forename: Joseph
authors.initials: J
authors.lastname: Azzopardi
authors.forename: Peter
authors.initials: P
authors.lastname: Beck
authors.forename: Natasa
authors.initials: N
authors.lastname: Bratina
authors.forename: Scott G
authors.initials: SG
authors.lastname: Cunningham
authors.forename: Carine
authors.initials: C
authors.lastname: De Beaufort
authors.forename: Noemi
authors.initials: N
authors.lastname: Debacker
authors.forename: Przemyslawa
authors.initials: P
authors.lastname: Jarosz-Chobot
authors.forename: Michael
authors.initials: M
authors.lastname: Jecht
authors.forename: Ulf
authors.initials: U
authors.lastname: Lindblad
authors.forename: Tony
authors.initials: T
authors.lastname: Moulton
authors.forename: Želiko
authors.initials: Ž
authors.lastname: Metelko
authors.forename: Attila
authors.initials: A
authors.lastname: Nagy
authors.forename: George
authors.initials: G
authors.lastname: Olympios
authors.forename: Simion
authors.initials: S
authors.lastname: Pruna
authors.forename: Michael
authors.initials: M
authors.lastname: Røder
authors.forename: Svein
authors.initials: S
authors.lastname: Skeie
authors.forename: Fred
authors.initials: F
authors.lastname: Storms
authors.forename: Massimo
authors.initials: M
authors.lastname: Massi Benedetti
mesh_terms: D016494:Computer Security; D003219:Confidentiality; D003625:Data Collection; D030881:Disclosure; D005060:Europe; D063025:Health Information Management; D006801:Humans; D007256:Information Systems; D016347:Medical Records Systems, Computerized; D011785:Quality Assurance, Health Care; D012042:Registries; D011795:Surveys and Questionnaires