Evaluation of Cancer Outcomes Barwon South West Registry

The Evaluation of Cancer Outcomes Barwon South West Registry (ECOBSW Registry) is a regional dataset of diagnosis, clinical pathways, and outcomes for all people diagnosed with cancer in the Barwon South West region.

The registry supplies evidence-based data for cancer service redesign projects.

Data includes stage at diagnosis, first-line treatments, and subsequent outcomes. The dataset provides comprehensive information to inform clinical and population health decision-making for all residents of the region. It can be used to:

identify variations in care and underlying causes
monitor incidence, recurrence rates, and survival within the BSW region
monitor patient pathways and identify referral patterns
support service planning
support research initiatives to understand and improve cancer care in the region.

More information

ECOBSW Registry privacy and access policy

ECOBSW Data Request Form

VICS Data analysis

Cancer Services Performance Indicators (CSPI)

For research purposes, a de-identified ECOBSW Registry dataset is available on request. All requests are reviewed and approved by the ECOBSW Steering Committee prior to release of data. Please ensure you have read our Privacy and Access Policy prior to submitting a request form.

Requests can be made for aggregate, de-identified data extracts, summary ad-hoc reports, and/or data linkages for appropriate research. All data requests are formally reviewed by the ECOBSW Steering Committee.

Any interested party may request data extracts and summary data reports for the purposes of academic research, clinical review, departmental planning, or other investigations.

All applications must conform to the conditions set out in ECOBSW Privacy and Access Policy. Researchers are required to seek and obtain local human research ethics committee (HREC) approval for proposed research before ECOBSW can release any data for purposes outside its primary quality assurance scope.

It is best to contact ECOBSW directly before submitting a written request for data or obtaining HREC approval to ensure the project is eligible for consideration.

To request data:

Read the ECOBSW Registry privacy and access policy.
Email Anam.Khalid@barwonhealth.org.au to discuss project eligibility.
Complete the ECOBSW data request form.

The ECOBSW Steering Committee will then review your application and notify you of the outcome.

Data is released with a strict caveat and conditions of use and all researchers must sign a confidentiality agreement.
Any further use of the data, beyond the approved original scope, must be approved by the ECOBSW Steering Committee.
Similarly, any additional requests from new researchers to collaborate on previously released ECOBSW data must be reviewed by the ECOBSW Steering Committee.
Provision of data requests and/or analyses may incur a cost recovery fee, at the discretion of ECOBSW.

ECOBSW Registry data governance

To maintain privacy, confidentiality and data security, the ECOBSW Registry has a comprehensive governance structure – including a robust data management framework.

Information collected and collated by the ECOBSW Registry is stored in a secure, password-protected database. The data is housed and managed in accordance with the Improving Cancer Outcomes Act 2014 and does not contravene statutes or Health Privacy Principles contained in the Health Records Act 2001.

A Steering Committee provides oversight of the ECOBSW Registry, including:

developing policies for data access
responding to quality-of-care issues
reviewing research and data requests
protecting the needs and interests of all stakeholders
overseeing financial responsibilities
promoting compliance with privacy legislation
promoting data quality improvement processes
incorporating consumer perspectives.

ECOBSW clinical indicator program

The ECOBSW Registry allows us to measure and monitor the degree to which healthcare benefits the patient, and how closely that care aligns with evidence-based practice.

Our clinical quality indicator program provides a snapshot of the care administered across the BSW region. Indicators were selected based on common presentations, evidence, importance for safety and quality, and can be analysed using the ECOBSW dataset.

The clinical indicators were developed by an expert working group following an extensive review of Australian and International clinical practice guidelines.