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Australian Institute of Health and Welfare 2020. Clinical quality registries. Canberra: AIHW. Viewed 28 November 2020, https://pp.aihw.gov.au/reports/australias-health/clinical-quality-registries
Australian Institute of Health and Welfare. (2020). Clinical quality registries. Retrieved from https://pp.aihw.gov.au/reports/australias-health/clinical-quality-registries
Clinical quality registries. Australian Institute of Health and Welfare, 23 July 2020, https://pp.aihw.gov.au/reports/australias-health/clinical-quality-registries
Australian Institute of Health and Welfare. Clinical quality registries [Internet]. Canberra: Australian Institute of Health and Welfare, 2020 [cited 2020 Nov. 28]. Available from: https://pp.aihw.gov.au/reports/australias-health/clinical-quality-registries
Australian Institute of Health and Welfare (AIHW) 2020, Clinical quality registries, viewed 28 November 2020, https://pp.aihw.gov.au/reports/australias-health/clinical-quality-registries
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Clinical quality registries are mechanisms for monitoring the quality of health care delivered to a specified group of patients through the collection, analysis and reporting of relevant health-related information. Clinical quality registries collect and analyse clinical data to identify benchmarks for clinical performance and related variation in clinical outcomes. Along with these clinical data, registries can include such data as demographics, administrative transactional data, and patient-reported experiences and outcomes. The registries report this information to clinicians to improve their clinical practice and decision making. Ongoing reporting of clinical data from the registry completes the clinical outcome feedback loop (Figure 1) which is a defining feature of clinical quality registries (ACSQHC 2019a).
Source: ACSQHC 2016: Figure 2.
Effective clinical quality registries need to have an integrated process for collecting and analysing clinical data defined according to agreed data definitions and data collection standards. Some examples of the types of progression these registries have gone through to improve their data are at Table 1.
Clinical quality registries collect data on processes of care and health outcomes, and in some cases patient-reported outcome measures, patient-reported experience measures and health system costs. Each component of the data can contribute to understanding the benefits and cost effectiveness of treatment and care from the perspectives of patients, clinicians, health service administrators, health insurers and government authorities. Clinical quality registries thus have great potential to inform health system improvements at the patient, clinician, local, national and Australasian levels (ACSQHC 2019a).
Clinical quality registry
Status at 2009
Status at 2019
Neck of Femur Fracture Registry of Australia (NOffRA)/Australia & New Zealand Hip Fracture Registry (ANZHFR)
Pilot project covering 3 opt-in hospitals entering data according to the ‘Standardised Audit Fractures in Europe’ model
Automated data validation and time-sequence checks, and automated and manual data completeness checks, for data from 67 participating hospitals
National Breast Cancer Audit (NBCA)/ BreastSurgANZ Quality Audit
Data quality assurance under development
Detailed user manual for online data entry by participating breast cancer surgeons
Bi-National Burns Registry (BNBR)/Burns Registry of Australia and New Zealand (BRANZ)
‘Interoperable Framework’ under development to standardise entry of burns units’ data to a centralised registry
Data dictionary with detailed specifications for web-based data entry at participating sites
Australasian Rehabilitation Outcomes Centres (AROC)
Continual improvement through use of data dictionaries, audits and training
Further improved through development of web-based interface
Australian Cardiac Procedures Registry (ACPR)/Australasian Cardiac Outcomes Registry
Achieved through use of standardised data dictionaries and training of hospital-based data collectors
Merging established registry with Melbourne Intervention Group Percutaneous Cardiac Intervention Registry, and extending data collection to other implantable cardiac devices
Australian Stroke Clinical Registry (AuSCR)
Achieved at participating hospitals through AuSCR online tool with data dictionary, dropdown menus, logic checks and mandatory fields
Extended to further participating hospitals through registration and training site links
Sources: ACSQHC 2010; ANZHFR 2020; RACS 2019; BRANZ 2020; AROC 2020a; ACPR 2020; AuSCR 2020.
Clinicians and colleges of surgeons and medical specialists operating in Australia and/or New Zealand have traditionally provided leadership in the development of clinical quality registries. They have often worked together with state health authorities, research institutions and dedicated non-government organisations such as Movember (for prostate cancer).
The Australian Commission on Safety and Quality of Health Care (ACSQHC) has produced a framework for clinical domains that are important to the delivery of improved health care to Australians. Table 2 summarises the status of Australia’s clinical quality registries according to the ACSQHC framework of prioritised clinical domains. The registry’s status ranges from a clinical domain for which no registry has been developed (mental illness) or is in its infancy (dementia), to clinical domains where there is a national registry along with related registries in several states and territories (trauma).
Where registries have been developed for a clinical domain, they often have excellent coverage of the health services within this domain. For instance, all hospitals in Australia that undertake joint replacement surgery participate in the National Joint Replacement Registry (AOANJRR 2020); all 26 Australian hospitals designated as major trauma centres are involved in the Australia New Zealand Trauma Registry (Monash University 2020); and all renal units in Australia and New Zealand contribute data to the Australia and New Zealand Dialysis and Transport Registry (ANZDATA 2019). Similarly, the Breast Surgeons of Australia and New Zealand Quality Audit covers 90% of breast cancer cases in Australia and New Zealand (BreastSurgANZ 2020) and the Critical Care Resources Registry collects data from about 80% of all intensive care units across Australia and New Zealand (ANZICS 2020a). However, many registries are still at a roll-out stage, using as their basis opt-in hospitals (especially hospitals in Victoria).
Australia currently has about 65 clinical quality registries at some level of development or use, including several not listed in Table 2 (ACSQHC 2019a). An example is the Australasian Rehabilitation Outcomes registries (AROC 2020b), which cannot be assigned exclusively to a single clinical domain even though many rehabilitation patients are receiving care for musculoskeletal conditions.
The ACSQHC recently published the Australian Register of Clinical Registries. This register will make information on all clinical registries, including clinical quality registries, available to facilitate collaboration and awareness of registry activity among key stakeholders (ACSQHC 2019b).
There are 2 clinical domains for which Australia does not have a clinical quality registry, but other countries do. For example, in the case of mental health, the United States, Malaysia and countries in Latin America, among others, have developed schizophrenia registries (ACSQHC 2016). For dementia, Sweden assesses the quality of care delivered to elderly people with cognitive impairments through data collected under the Patient Data Act (Mattsson 2016).
Coronary heart disease
Australasian Cardiac Outcomes Registry; ANZSCTS National Database
National Joint Replacement Registry; Australian Spine Registry; Australian & New Zealand Hip Fracture Registry
Australia New Zealand Trauma Registry; Victorian State Trauma Registry; incomplete data capture in other state/territory registries
Adult critical care
Critical Care Resources Registry; Adult Patient Database; Central Line Associated Blood Stream Infection Dataset
High burden cancers
Bi-National Colorectal Cancer Audit; Australian Breast Device Registry; Breast Surgeons of Australia and New Zealand Quality Audit; Prostate Cancer Outcomes Registry—Australia and New Zealand; Victorian Lung Cancer Registry; Upper Gastrointestinal Cancer Registry; National Gynae-Oncology Registry; Lymphoma and Related Diseases Registry
Australian Stroke Clinical Registry
Chronic kidney disease
Australia and New Zealand Dialysis and Transplant Registry; Registry of Kidney Diseases
Neonatal critical care
Paediatric Intensive Care Dataset
No existing registry
Australasian Maternity Outcomes Surveillance System
The Australia Dementia Network is establishing the first national registry for people with dementia and mild cognitive impairment
Burns Registry of Australia and New Zealand
Australian National Diabetes Audit
Sources: ACSQHC 2016; Monash University 2017; ANZICS 2020b.
Consultation to develop a national clinical quality registry strategy was launched in May 2019 with the following vision (Department of Health 2020):
National clinical quality registries are integrated into Australia’s health care information systems and systematically drive patient-centred improvements in the quality and value of health care and patient outcomes, across the national health care system.
For more information on clinical quality registries, see:
ACPR 2020. Australian Cardiac Procedures Registry. Viewed 28 February 2020.
ACSQHC (Australian Commission on Safety and Quality in Health Care) 2010. Testing and validating the draft operating principles and technical standards. Sydney: ACSQHC. Viewed 28 February 2020.
ACSQHC 2016. Prioritised list of clinical domains for clinical quality registry development: final report. Sydney: ACSQHC. Viewed 28 February 2020.
ACSQHC 2019b. Australian Register of Clinical Registries. Viewed 28 February 2020.
ACSQHC 2019a. National arrangements for clinical quality registries. Viewed 28 February 2020.
AROC (Australasian Rehabilitation Outcomes Centre) 2020b. Archived reports and benchmarks. Viewed 28 February 2020.
AROC 2020a. The AROC Dataset. Viewed 28 February 2020.
ANZDATA 2019. Australia and New Zealand Dialysis and Transplant Registry. Viewed 28 February 2020.
ANZHFR 2020. Australian & New Zealand Hip Fracture Registry. Viewed 28 February 2020.
ANZICS (Australian and New Zealand Intensive Care Society) 2020b. ANZICS core registries. Viewed 28 February 2020.
ANZICS 2020a. Critical Care Resources Registry. Viewed 28 February 2020.
AOANJRR (Australian Orthopaedic Association National Joint Replacement Registry) 2020. AOANJRR home page. Viewed 28 February 2020.
AuSCR 2020. Australian Stroke Clinical Registry (AuSCR). Viewed 28 February 2020.
BRANZ 2020. Burns Registry of Australia and New Zealand data collectors. Viewed 28 February 2020.
BreastSurgANZ (Breast Surgeons of Australia and New Zealand) 2020. BreastSurgANZ Quality Audit 2020. Viewed 28 February 2020.
Department of Health 2020. Draft national clinical quality registry strategy: maximising the potential of Australian clinical quality registries (2019–2029). Viewed 23 April 2020.
Mattsson T 2016. Quality registries in Sweden, healthcare improvements and elderly persons with cognitive impairments. European Journal of Health Law 23:453–469. Viewed 28 February 2020.
Monash University 2017. Monash clinical registries portfolio 2017. Clayton, Victoria: Monash University. Viewed 28 February 2020.
Monash University 2020. Australian Trauma Registry (ATR). Viewed 31 January 2020.
RACS (Royal Australasian College of Surgeons) 2019. BreastSurgANZ Quality Audit. Viewed 28 February 2020.
2 Oct 2020 - Text was changed in Table 2: Australian clinical domains identified for national registry development.
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