PCOR-ANZ is housed in two locations at Monash University. The Monash Registry Database security is maintained using encryption of data, a managed and audited protocol for access, training and accreditation of personnel, and role-based access and authentication of data.
Monash Registry Databases are housed and managed in an ISO 27001 certified environment. The ISO 27001 certification incorporates the Privacy Act (1988) and Health Records Act (2001) within its Applicability Statement. External hosts would be expected to have similar Acts incorporated into their Applicability Statement.
Access to information collected by PCOR-ANZ is subject to strict protocols and procedures to ensure that privacy, confidentiality and ethical principles are maintained at all times. The provision of data will be subject to an agreed ethics protocol that will be submitted to relevant organisations such as hospitals and cancer registries.
Researchers wishing to access de-identified data from the PCOR-ANZ registry and/or from participating state, territory or regional registries will be required to complete a Data Access Form. This should be accompanied by a relevant ethics committee certification. In the Australian Captial Territory (ACT), approval for release of de-identified data must also be obtained from the Director of the Cancer Registry. For questions relating to the Data Access Policy, please contact firstname.lastname@example.org.
Requests from participating clinicians, institutions and academic organisations will be fulfilled without charge. Request from non-participating institutions will be considered on a case-by-case basis by the PCOR-ANZ Steering Committee, and may be subject to a processing fee.