Clinical Quality Indicators for a Brain Cancer Registry

Optimising quality of life and survival for brain cancer patients Australia-wide.

The Brain Cancer Biobanking Australia (BCBA) will establish a process for identifying and refining a set of clinical indicators to measure quality of care across the entire trajectory of the brain cancer patient journey.

The BCBA will convene a multi-disciplinary panel of brain cancer experts to prioritise and gain consensus on paediatric and adult quality care clinical benchmarks. The indicators developed will be used to build a national clinical registry. Once established, the data collected will guide clinicians, hospitals and other stakeholders in activities to reduce variations in care, ultimately optimising quality of life and survival for brain cancer patients Australia-wide.

Start date 3 June 2019

Expected completion date 21 October 2019

Investment by ARDC $49,999

Co-investment partners

Brain Cancer Biobanking Australia (BCBA)

Cooperative Trials Group for Neuro-Oncology (COGNO)

NHMRC Clinical Trials Centre (USyd)

The Australian and New Zealand Children's Haematology/Oncology Group (ANZCHOG)

Public Health and Preventive Medicine – Monash University

eHealth Research Centre (Qld)

Cancer Epidemiology Research Unit (UNSW)

Lead node

1 Establish a leadership group for the development of brain cancer quality care indicators

A BCBA clinical quality registry working group will be established with the relevant expertise to lead this project. The working group will identify and engage brain cancer community experts in various areas (neurosurgery, neuro-oncology, radiation oncology, neuropathology, neuro-radiology, neurology, cancer epidemiology, palliative care, nurse care coordinators and consumers) to participate in a consensus process (using the Delphi method) to develop a set of quality of care indicators.

2 Conduct literature review

A literature review will be conducted to identify research articles and clinical guidelines related to quality of care indicators in brain cancer and to determine appropriate studies and guidelines for the development of a preliminary set of quality of care indicators.

3 Identify preliminary list of indicators

Guided by the literature review, the BCBA clinical quality registry working group will reach agreement on a preliminary set of quality of care indicators that will form the basis of the expert review process to identify the final set of indicators for the proposed national paediatric and adult clinical quality of care registry.

4 Completion of projects

Project outcomes will be presented at an ARDC Infrastructure Summit in October 2019.

Core features

Dataflow

Increase the available data required to evaluate the quality of care received by brain cancer patients across Australia.

Measurements

Provide data needed to measure variations in care for brain cancer patients.

Collaborate

Develop a collaborative approach to optimising quality of care for brain cancer patients across Australia.

Who is this project for?

Researchers
Brain cancer clinicians
Hospitals
State & Federal Health Departments
Peak bodies such as Cooperative Trials Group for Neuro-Oncology (COGNO), Australian and New Zealand Children’s Haematology/Oncology Group (ANZCHOG), Neurosurgical Society of Australasia (NSA)

What does this project enable?

This project will enable the relevant clinical stakeholders to reach consensus on the clinical quality indicators essential to guiding the collection of data for a clinical registry that ultimately will facilitate evaluations of the quality of care delivered to brain cancer patients across Australia.