How secure will the information be?
Information is managed according to policies and procedures covering privacy, data access, and governance. The NCR complies with state, territory and Commonwealth privacy laws and the registry has been approved by a Human Research Ethics Committee.
There are multiple layers of security and protection of an individual’s privacy. At the lowest level, NCR will not store personal patient identifiers; instead, there will be a code. The database itself is only accessible by authorised users from participating registries and the NCR Project team. Access is tightly controlled with user verification and multifactor authentication. Data is stored in accordance with the Australian Commission on Quality & Safety in Health Care’s recommended security standards.
The NCR continues to maintain Human Research Ethics Committee (HREC) approval under the National Mutual Acceptance (NMA) scheme. A waiver of consent has been approved, with each state and territory registry operating under differing models of ethics and governance approvals based on their own structure and relevant legislation.
In 2024 the registry obtained HREC approval to accept data from eligible hospitals who are unable to participate via a state or territory-based registry. An opt-off approach to consent has been approved for patients having a PCI at these hospitals. Local Governance (or equivalent) approvals will be obtained for new hospitals that contribute data directly to the NCR.
For more information regarding NCR’s policies please contact info@nationalcardiacregistry.org.au.