Table 1

Privacy contingency risks

ElementNature of risksLevel of risk*CommentsMitigating mechanisms
LowMediumHigh
Individual data: pseudonym used for patients’ IDs + data aggregated (n = 5 patients per cell)Individual privacy×Pose an indirect risk to individual’s privacyNon-reversible de-identification
Pseudonym used for centres’ IDsNon-individual privacy×Pose an indirect risk to centres’ privacyReversible de-identification + reporting system: percentage
Data transmissionSecurity measures×Pose an indirect risk to individual’s privacyEncryption
Access to the BIRO networkSecurity measures×Pose an indirect risk to individual’s privacySecure applications;hacking tests
Global statistical analysisIndividual privacy + non-individual privacy + security measures×Pose an indirect risk to individual’s privacy and centres privacyNon-reversible de-identification + encryption
  • *Low, risk can materialise but mitigating factors exist; moderate, risk is likely to materialise if no corrective measures are taken; high, there is a high chance that negative effects will materialise if no corrective measures are taken.

  • BIRO, Best Information Through Regional Outcomes; ID, identification.

  • *Low, risk can materialise but mitigating factors exist; moderate, risk is likely to materialise if no corrective measures are taken; high, there is a high chance that negative effects will materialise if no corrective measures are taken.

  • BIRO, Best Information Through Regional Outcomes; ID, identification.