Back to all resources

Paediatric Palliative Care National Data Project Report

Paediatric Palliative Care National Data Project Report



This report has completed the tasks of identifying data collection methods and consulting with relevant national committees.

The report:

  • Outlines the necessary data points (a ‘data dictionary’) and the mechanisms for collecting them to support the National Palliative Care Strategy.
  • Establishes nationally consistent data collection and public reporting.

To improve the quality and accessibility of services for children receiving palliative care and their families, robust data is needed.

This report outlines the benefit of utilising a Clinical Quality Registry framework (CQR) for the collection and use of the data.

This model allows services to benefit from data analysis and national benchmarking to inform service-level quality improvement, and service planners to identify broader service gaps, learning from national best practices and providing data analysis to clinical services which would otherwise go without.

Benchmarks relating to quality of care, outcome measures, clinical profile of families, service offerings, consumer engagement in service design, and staffing, will be identified and pursued for the first time.

Investment in the development of a paediatric palliative care Clinical Quality Registry will:

  • Build the quality and availability of paediatric palliative care services in Australia.
  • Support families through the most difficult of circumstances, in perpetuity.
  • Improve patient outcomes.
  • Reduce hospital costs.
  • Inform research.
  • Facilitate return-on-investment.

This will bring Australia in line with international practices which collect and report on national data for paediatric palliative care.

Do you want to know more? Click on the button below and download the report: