National e-clinical quality registry | Leukaemia Foundation

National e-clinical quality registry

Accelerate the development of a national e-clinical quality registry for blood cancers

The Issue

In Australia the absence of national data on the health care outcomes for people with blood cancers severely limits the capacity to measure and monitor the benefit to patients of the care they receive and how consistently the care aligns with evidence-based practice.

What we know

  • Currently the only data national available about cancers is diagnosis data collected by state cancer registries and death data collected by the ABS. Although this data is of high quality, it is incomplete and lacks information about treatment outcomes.
  • Outcome information is essential for both measurement and monitoring of the impact of health care practices on outcomes and to see if and how well the care provided aligns with evidence-based practice.
  • This is a significant gap in cancer healthcare information in Australia which impedes good decision making for the care of people with cancer.
  • The Australian Commission on Safety and Quality in Health Care (ACSQHC) has identified national clinical quality registries (CQRs) as a cost-effective way to address the gaps in evaluating healthcare in Australia (2014) (Australian Commission on Safety and Quality in Health Care (2014): Framework for Australian clinical quality registries).
  • Blood cancers (all types of leukaemia and lymphoma) have been identified in the Prioritisation of clinical quality registries (ACSQHC, 2016) (Australian Commission on Safety and Quality in Health Care (2016): Prioritisation of clinical quality registries – discussion paper) as meeting many of the criteria required for priority in the development of proposed CQRs.
  • Blood cancers rank highly because of their high burden of disease, high cost of treatment, meeting the feasibility criteria and because of the multiple and significant consequences of poor quality care – reduced life expectancy, increased disease recurrence, increased adverse treatment effects, poor quality of life and increased health system costs.
  • The Leukaemia Foundation believes that with technological advances, the ability to collect and access real-time big data should be standard practice. The CQR strategy needs to be accelerated to ensure Australians get access to this vital data.
  • Data available in a national clinical quality registry for blood cancers will help to reduce the current inequities of access arising from data gaps for rare subtype, especially when a targeted therapy is already available on the PBS for a more common cancer.
  • Our 2015 survey of 675 patients seeking access to new drugs indicated:

– 42% were unable to access new medicines through the PBS

– 20% accessed the new medicine, 76% of whom did so though a clinical trial

– 22% had no alternative but to fundraise or sell assets to meet the full price of the therapy.

  • These experiences are not recorded by cancer registries.
Posted on February 7th, 2018

Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.

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