Data, governance, and research

Learn more about VCCOR data, our governance, and how to request access.

Data Partners

PICS works with our partner health services and key stakeholders to align VCCOR to the Victorian Government’s Data Quality Guideline, which identifies seven dimensions of data quality (otherwise referred to as data integrity) – completeness, representative, timeliness / currency, fit for purpose, consistency, collection (consistency) and accuracy.

This is achieved through robust data sharing agreements and ethical approvals to support secure data collection, integration and use.

VCCOR registrations and data flows from:

1. 1. The statewide PICS Long Term Follow-up Program (LTFP)
   2. The Victorian Cancer Registry
   3. The Royal Children’s Hospital
   4. Monash Children’s Hospital
   5. Peter MacCallum Cancer Centre.

VCCOR data dictionary

The VCCOR Data Dictionary, is a central reference to support understanding of what is collected, and any information required for correct entry and interpretation of the data. It defines each data element, including its description, coding standards, permissible values; and specifies when and how the data is collected. The Dictionary also records the original data sources and provides guidance on reporting, validation, and interpretation.

Where applicable, data elements are aligned with recognised ontologies and national or international coding standards (e.g. diagnoses follow ICD-O morphology codes), ensuring consistency and comparability across registries and research outputs.

We encourage researchers to review the VCCOR Data Dictionary before completing the data request form.

Data access (coming soon)

Once VCCOR is live, we support the appropriate use of VCCOR data to improve care and outcomes for paediatric cancer patients.

Access to VCCOR data is restricted to protect patient confidentiality. Researchers wishing to access de-identified VCCOR data will be required to complete a data request form, accompanied by relevant ethics certification.

Requests from VCCOR data partners will be fulfilled without charge. Requests from other bodies may incur a fee.

The VCCOR Data Access and Research Guidelines (coming soon) provide further information. The document outlines:

• • our data access framework and risk criteria
  • the full application process
  • data release format, and conditions of access
  • authorship and publication considerations.

We encourage researchers to review the VCCOR Data Access and Research Guidelines before completing a data request form.

For questions relating to VCCOR data access, please contact us.

Governance, risk, and compliance

VCCOR’s governance is guided by legislated healthcare data objectives and principles of good governance, ensuring the secure use, protection, and stewardship of data across all environments. Aligned with the VICS Data Strategy and VDIMF recommendations, VCCOR’s governance incorporates:

• • Centralised oversight with dedicated roles and groups driving continuous improvement.
  • Risk management processes to safeguard data security, confidentiality, and privacy.
  • Data quality controls to ensure accurate system use.

Registry access is restricted to authorised users with multi-factor authentication, and IT experts continuously monitor network, security, and platform performance. The cross-functional governance structure provides central oversight and compliance, guided by regularly updated Terms of Reference reflecting the Registry’s evolution.

VCCOR operates under comprehensive ethics approvals from a certified HREC, data sharing agreements, site-specific agreements, partner approvals, and authorisation from the Victorian Cancer Registry, forming the basis for data collection and management.

All data access requests undergo strict review by the Governance and Strategy Committee, with intermediate-to-high risk applications referred to the Royal Children’s Hospital Research Ethics and Governance for approval. This ensures compliance with ethical, legal, and governance standards. Ongoing obligations, including annual HREC and partner site reports, are also maintained.

The Governance and Strategy Committee

The VCCOR Governance and Strategy Committee has played a central role since development of the registry commenced. Initial requirements were drafted through consultation with many of the members from the Committee, who have remained engaged throughout the development phase and continue to advise on matters of data governance, quality, and integrity.

The Committee represents a broad range of stakeholders, including consumers with lived experience of cancer, ensuring that diverse perspectives inform decision making and that the Registry reflects the needs of those we serve (the public).

Membership brings together a mix of skills and expertise across clinical, research, health informatics, technology and governance domains. The Committee meets regularly to provide strategic guidance, review progress, and advise on key issues. Sub-groups are convened as required to provide specialist input.

The Steering Committee’s contribution has been, and remains, crucial to shaping the Registry’s direction and supporting its ongoing success.

Publications

Conference Presentations

• • The VCCOR Development Pathway: Advancing Quality in Paediatric Cancer Care: Research, Outcomes, and Service Improvement with VCCOR. 2025 National Cancer Survivorship Conference, Rydges Melbourne, Melbourne, Victoria. [link to poster]