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).

Figure 1: Clinical improvement cycle in clinical quality registries

The clinical improvement cycle starts with clinicians’ reporting of clinical data to the clinical quality registry, where data analysis produces information reported back to the clinicians. The clinicians’ improved knowledge of their clinical performance gives them the wisdom to improve their clinical care, as reported back to the registry.

Source: ACSQHC 2016: Figure 2.

Clinical quality registry development to date

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).

Table 1. Examples of progress by clinical quality registries towards data improvement

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).

Table 2: Australian clinical domains identified for national registry development

Clinical domain

Registries

Coronary heart disease

Australasian Cardiac Outcomes Registry; ANZSCTS National Database

Musculoskeletal conditions

National Joint Replacement Registry; Australian Spine Registry; Australian & New Zealand Hip Fracture Registry

Trauma

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

Stroke

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

Mental health

No existing registry

Maternity

Australasian Maternity Outcomes Surveillance System

Dementia

The Australia Dementia Network is establishing the first national registry for people with dementia and mild cognitive impairment

Major burns

Burns Registry of Australia and New Zealand

Diabetes

Australian National Diabetes Audit

Sources: ACSQHC 2016; Monash University 2017; ANZICS 2020b.

National strategy for clinical quality registries

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.

Where do I go for more information?

For more information on clinical quality registries, see:

References

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.