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Ethics and governance

Ethics and Governance

PCOC has established a robust ethics and governance framework that supports both the national program and participating sites. This framework is aligned with the principles outlined in the Australian Framework for National Clinical Quality Registries (2024) and ensures compliance with ethical, legal, and privacy standards for the collection and use of patient data. 

For more information, refer to the Ethics and Governance Guideline.

 

The Population and Health Services Research Ethics Committee (PHSREC) is the Lead HREC for the PCOC Program.

The PHSREC is accredited as a lead HREC for multi-centre ethical review processes for population health and/or public health research.

The PHSREC granted ethics approval to the PCOC Program, specifically for:

  • Quality Improvement and Benchmarking - The collection, analysis and reporting of re-identifiable data from palliative care providers, and for collection of this information without patient consent.
  • Research - Establishment of a secure data environment and research infrastructure for creating a research databank

The PHSREC granted a waiver of consent for the use of re-identifiable information in accordance with Section 2.3 of the National Statement on Ethical Conduct in Human Research.

Indigenous Data Collection and Ethics Approval

PCOC collects Indigenous data variables, including Patient Indigenous status and Patient Preferred Language, to support the program's aim of representing palliative care services nationwide across all communities.

To ensure compliance with Indigenous Data Sovereignty principles, PCOC has consulted with the following committees:

  • The Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) Ethics Committee
  • The Western Australian Aboriginal Health Ethics Committee (WAAHEC)
  • The Aboriginal Health & Medical Research Council of NSW (AH&MRC)
  • The Aboriginal Health Council of South Australia (AHREC)
  • The Victorian Aboriginal Community Controlled Health Organisation (VACCHO)
  • The University of Tasmania Human Research Ethics Committee

PCOC’s data governance framework ensures the ethical, secure, and high-quality stewardship of national palliative care data. Robust quality assurance processes and automated validation systems are in place to uphold data integrity. 

Participating services submit data biannually, aligned with a national reporting schedule. Data is disseminated through multiple channels, including analytical reports and patient-level reports for retrospective clinical review. 

Ethical oversight is maintained through national ethics authorisation and annual compliance reporting. While contributing services retain ownership of their submitted data, PCOC acts as the custodian of the aggregated national dataset. 

Clearly defined governance roles support transparency and accountability, and local compliance is actively monitored. 

Refer to the following documents for more information: 

Palliative Services that submit their data to PCOC operate under their own research governance frameworks and, where applicable, follow the National Clinical Trial Governance Framework (NCTGF).

PCOC is currently working in partnership with participating services nationwide to secure updated local governance approvals that comply with current regulatory requirements. 

For further details, refer to the Ethics & Governance Guidelines.

For assistance with governance responsibilities or to request further information, please contact the PCOC Ethics and Governance Manager:

Nicola Howell
E: nichowell@uow.edu.au