The NCR is a clinical quality registry that will collect national data on the outcomes for patients who receive treatment for cardiovascular disease. The registry will focus on selected high burden, high-risk clinical conditions, cardiac procedures and devices.
Successful treatment of cardiovascular disease is dependent upon a highly organised and functional health care system along with skilled clinicians working together across the continuum of care. A well-coordinated system will provide; timely diagnosis of cardiac conditions, transportation to the best level of service, efficient management in the emergency department, a high-level of technical skill from clinicians responsible for restoring blood flow to the heart and effective after care centred on the particular needs of the patient and their family. Inadequacies at any point during this sequence of care may result in poor outcomes for patients and unnecessary additional costs to the health system. The NCR will provide a national picture on the state of cardiac care across of Australia.
Information is managed according to policies and procedures covering privacy, data access, and governance. The NCR complies with State and Commonwealth Privacy Laws and the data collection has been approved by a Human Research Ethics Committee. There are multiple layers of security and protection of individual’s privacy. At the lowest level, NCR will not store personal patient identifiers; instead, there will be a code. The database itself will only be accessible by approved users linked with the State registries and the NCR. Access will be tightly controlled with user verification and multifactor authentication. Data will be stored in accordance with the Australian Commission on Quality & Safety in Health Care’s recommended security standards.
The purpose of the NCR is to document outcome variance and opportunities for excellence in the quality of cardiac health care across Australia. A key way for this to be achieved is by producing reports. It is anticipated that the following reports will be produced in the NCR’s first year; an Annual Public Report and Inbuilt reports (real-time in the NCR platform). Reports will contain aggregate (non-identifiable) data only.
The registry is funded by the Commonwealth Department of Health.
Data will be submitted to the NCR by each state and territory registry. Currently there are cardiac registries established in Queensland, South Australia and Victoria. Tasmania is working with Victoria’s registry to submit data. Remaining states and territories are in different stages of readiness, both in establishing their own registry and submitting data to NCR. (See Participating Registries for further details).
Each participating State and Territory registry owns their submitted data.
The data custodian is the NCR entity.
Access to the data is strictly controlled by the NCR Steering Committee. Protocols are in place to ensure that the highest levels of privacy and safety are maintained. All requests for data will need to comply with NCR policies. Researchers and other external groups will be able to apply to the Steering Committee to access aggregate data.
Patients can apply to their participating state/territory registry to access their own data (see Participating Registries). Hospitals and clinicians’ will also be able to access their data via their local participating registries policies and procedures.
The NCR Steering Committee are developing policies and procedures to enable data access for researchers. Researchers wishing to access aggregate (de-identified) data will be to apply to the Steering Committee. Applications will need to be supported by a participating registry by inclusion of a co-investigator. Further details will be provided when this process has been established.
The NCR recognises the unique risks that research poses to Aboriginal and Torres Strait Islander people and communities. Researchers with an interest in Indigenous data will be required to meet NCR standards for ethical use of Indigenous data including the future formation of an Indigenous Expert Advisory Group.
Participation is managed by state and territory cardiac registries. Participating registries have varying models of data collection and participation, for details on your local state/territory registry please see their website, publications or contact details. Clinicians and hospitals who are interested in participation should contact their local registry directly.