National arrangements for clinical quality registries

Clinical quality registries are organisations that monitor the quality (appropriateness and effectiveness) of health care, within specific clinical domains, by routinely collecting, analysing and reporting health-related information.

Role of clinical quality registries

Clinical quality registries are a specific type of clinical registry. They:

  • Use the data they collect to identify benchmarks and variation in clinical outcomes
  • Feed this information back to clinicians to inform clinical practice and decision making.

This clinical outcome feedback loop shown in the graphic is the defining feature of clinical quality registries.

improving-clinical-practice-diagram

Registries may provide reports to jurisdictions, healthcare providers, funders, clinical colleges and researchers.

Clinical quality registries are therefore a fundamental part of continuous quality improvement in their role of:

  • Improving patient outcomes
  • Improving compliance with evidence-based guidelines and standards,
  • Informing the development of new guidelines and standards.

A framework for Australian clinical quality registries

The Commission developed the framework for Australian clinical quality registries to facilitate efficiencies in the development of national clinical quality registry infrastructure and to promote best practice design, development, operation and security. The framework was endorsed by Health Ministers in 2014 and contains:

  • Strategic principles
  • National health information arrangements
  • A national infrastructure model
  • Operating principles
  • Technical guidelines
  • Prioritisation criteria.

2014
Publication, report or update

Use of the framework

Application of the framework to clinical quality registries provides assurances that registry data, and the systems that hold those data, have satisfied minimum security, technical and operating standards.

The framework was developed in collaboration with states, territories and expert registry groups, and involved public consultation and piloting. The reports that summarise the testing and validation of the draft operating principles and technical guidelines for clinical quality registries provide insights into the application of the framework and may be useful to registries under development.

Work is required to develop a view on the national policy context for clinical quality registries. The Commission is undertaking a program of work in order to achieve this, using the Framework as an overarching guide.

Economic evaluation of clinical quality registries

The Commission engaged Monash University and Health Outcomes Australia to evaluate the economic impact of five Australian clinical quality registries. Using a conservative methodology the evaluation study showed that Australian clinical quality registries have delivered significant value for money, when correctly implemented and sufficiently mature.

Each of the five clinical quality registries included in the study:

  • Had an influence on clinical practice
  • Improved the value of healthcare delivery at relatively low cost.

Evaluation results

Substantial benefits were measured, including:

  • Greater survival for patients
  • Improvements in quality of life after treatment
  • Avoided costs of treatment or hospital stay.

The study found that:

  • Benefit to cost ratios ranged from 2:1 to 7:1 – meaning that for every dollar spent, the return on that investment ranged from $2 to as much as $7.
  • The return on investment could range from $4 if national coverage were achieved by all five clinical quality registries
  • Not every clinical quality registry will be cost-effective. Problems such as low coverage, inadequate reporting and inadequate collection of information about patient outcomes will limit the effect of clinical quality registries, and their value to the health system.

Prioritised list of clinical domains project

This project aimed to implement and document a process applying the prioritisation criteria (and other elements) in the framework, to create a prioritised list of clinical domains for potential development of national clinical quality registries.

The process used and combined the available data with the collective judgement of experts. Key steps included:

  • Shortlisting to identify a manageable list of diseases, conditions and interventions based on cost to the health system, burden of disease and stakeholder priorities
  • Identifying prioritisation criteria in the Framework that are essential to the successful functioning of a clinical quality registry (threshold criteria)
  • Applying threshold criteria to remove diseases, conditions and interventions that are not suitable for clinical quality registry development
  • Grouping remaining diseases, conditions and interventions into clinical domains
  • Prioritising clinical domains against the remaining prioritisation criteria.

Australian Register of Clinical Registries

Clinical quality registries (CQRs) have the potential to report on retrospective, current and prospectively collected data to a wide range of stakeholders including clinicians, patients, hospital administrators, government, funders and insurers. The collected data includes: processes of care, health outcomes, patient reported outcome measures (PROMs), patient reported experience measures (PREMs) and health system costs. Each component of the collected data contributes to our understanding of the benefit and cost-effectiveness of treatment and care from the perspectives of the patient, clinician, health service provider, health insurer and government. There is enormous potential for CQRs to inform care delivery at the patient, clinician, local, national and international levels.

The Commission has developed the Australian Register of Clinical Registries to facilitate collaboration and awareness of registry activity among key stakeholders. Once a clinical registry is registered via the online form, Commission staff may be in touch with the clinical registry to confirm the information provided. A brief summary of the registry, web link and registry contact details will be published on the Commission’s website.

Recent attempts to identify the number of clinical registries and CQRs in Australia suggest that there are approximately 65 in operation. The level of maturity of these registries, including their patient population and level of integration into existing health data systems, remains unclear. Of these registries, 46 fall within the prioritised clinical domains identified by the Commission for national CQR development.

Click on the link below to either register and provide details on your clinical registry or update previously provided information.

Australian Register of Clinical Registries

Future work

The Commission is continuing to progress the program of work required to develop a view on the national policy context for national clinical quality registries. This will include:

  • Updating the Framework to clarify governance arrangements
  • Developing a standard for clinical quality registries (using the Framework as the basis).

If you have any questions about the work being undertaken by the Commission, in regards to the Clinical Quality Registries please contact Bernadette Aliprandi-Costa and the project team via email CQR@safetyandquality.gov.au or phone 02 9126 3600.