The ACOR Registry requires collection of certain patient identifying information, and is composed of sensitive information; from individual patients, clinicians, and hospital sites. It is imperative that the privacy and confidentiality of its data is protected. The Operator is the custodian of the data and observes all laws in relation to privacy and confidentiality of the data.
The Operator and ACOR comply with the relevant Commonwealth, State and Territory legislation and regulations, specifically with the Privacy Act (1988) (‘the Privacy Act’), including the 11 Information Privacy Principles (IPPs), as if the Operator were an agency under the Privacy Act, and the National Privacy Principles (NPPs).
ACOR and the Operator act in accordance with the Operating Principles and Technical Standards for Australian Clinical Quality Registries Guidelines, and are guided by Human Research Ethics Committee review. HREC is responsible for resolution of any potential privacy complaints by individuals
All Registry personnel abide by ACOR Policies and Standard Operating Procedures, reasonable ACOR and Operator directives, and current and relevant privacy legislation and regulation including the “National Statement on Ethical Conduct in Human Research” and the “Australian Code for Responsible Conduct of Research” in addition to the above.
Confidential information is defined as information designated as confidential by the Discloser or which should by its nature reasonably be considered to be confidential information and may be provided in writing, electronically, verbally or otherwise. It does not include any information proven to be in the public domain or known by the Recipient at the time of disclosure, other than through a breach of contractual agreement.
All Registry personnel must take measures to keep confidential and not disclose to any person any Confidential Information regarding the Registry except as authorised or required by law, as per the terms of contractual agreement with ACOR.
Privacy and confidentiality measures affecting all types of Registry data handling including input, access, output, and also database linkage are taken. Education and training are provided to all staff as appropriate.