Rare Voices Australia (RVA) congratulates the Australian Commission on Safety and Quality in Health Care on the revised Australian Framework for National Clinical Quality Registries 2024 (The Framework). RVA is pleased to see the overall simplification of advice in The Framework, particularly across the operating principles, which acknowledge the different settings where clinical quality registries (CQR) operate.
As the national peak body for Australians living with a rare disease, RVA lodged a Submission and participated in the consultation process for the Framework for Australian clinical quality registries Second Edition – consultation version. RVA’s Submission was guided by, and aligns with, the priorities, actions and implementation steps in the Australian Government’s National Strategic Action Plan for Rare Diseases.
Specifically, RVA welcomes The Framework’s:
- removal of prescriptive advice, particularly around specific feasibility criteria for CQR, which was highlighted in RVA’s Submission as a potential barrier to developing CQR for rare diseases
- strong mention of consumer and community involvement throughout The Framework. This includes mention of specific roles for consumers and community in CQR design, governance and reporting, and the inclusion of consumer representatives as members of the operational group responsible for implementation of CQR
- recognition of the need to diversify data sources for CQR, including collection of data direct from consumers. This is particularly important in rare disease where data is limited and siloed
- practical checklists linked to each section throughout The Framework
- positioning of CQR as part of a learning health system
Download the Revised Australian Framework for National Clinical Quality Registries 2024
Download The Framework and supporting materials on the Australian Commission on Safety and Quality in Health Care’s website.
Background
Australia’s national CQR collect, analyse and report information about the care and outcomes being delivered by health service organisations. They serve as a key driver of ongoing improvements in the safety and quality of the care provided to Australian consumers, including Australians living with a rare disease.
In rare disease, low prevalence, high burden of disease, high levels of unmet need and variations in care, met with limited treatment options, make registries vital instruments for informing better outcomes. Nonetheless, in Australia, data for most rare diseases is not captured in either health information systems or registries,2 and there is no coordinated strategy to collect, measure, build and translate data that does exist.
Multiple research papers and stakeholder consultation processes in Australia have identified the need for a national, coordinated, and systematic approach to the collection and use of rare diseases data, including registries.1
References
- Australian Government Department of Health. National Strategic Action Plan for Rare
Diseases. Canberra; 2020. 63 p. Available from:
https://www.health.gov.au/resources/publications/national-strategic-action-plan-for-rare-diseases?language=en - Lacaze P, Millis N, Fookes M, Zurynski Y, Jaffe A, Bellgard M, Winship I, McNeil J, Bittles AH.
Rare disease registries: A call to action. Int Med J. 2017;47(9):107579. Available from:
https://doi.org/10.1111/imj.13528
