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Australian Palliative Care Outcomes Registry

Data collected through the Palliative Care Outcomes Collaboration (PCOC) is curated into the Australian Palliative Care Outcomes Registry (APCOR), which provides a secure and governed pathway for external data access. 

Access to APCOR data is governed by the PCOC Data Access Policy and supporting governance documents to ensure appropriate, ethical, and privacy-conscious use. 

All applicants must submit an Expression of Interest (EOI) via the online form. EOIs are accepted year-round and are reviewed for feasibility, alignment with the PCOC Strategic Research Plan, and to ensure the proposed project addresses a clear gap without duplicating existing research. Before submitting an EOI, please review the list of approved projects and requests under consideration to avoid overlap. 

New applications must be received at least 28 days in advance of the next scheduled meeting to be included for review. 

The next scheduled meeting dates are: 

 

Application Deadline
**Due by 5:00pm (AEST/AEDT)		 APCOR Meeting Date
Wednesday, 1 October 2025

Wednesday, 29 October 2025
Wednesday, 25 February 2026

Wednesday, 25 March 2026
Wednesday, 24 June 2026

Wednesday, 22 July 2026

Contact the Registry Coordinator:

Dr Lisa Redwood

P: 02 4239 3272

E: apcor-coord@uow.edu.au

Data Release Guidelines

Purpose and Scope

Access to data collected and collated by PCOC for APCOR is guided by protocols and procedures to maintain privacy and confidentiality. Provision of data to the registry is subject to the study protocol, which has been approved by NSW Population & Health Services Research Ethics Committee and the relevant Research Governance Offices of participating services. This document provides guidance to the APCOR’s approach to dealing with requests to access registry data, and outlines the procedures for applicants to follow when making a data access request.

 

Background

The Australian Palliative Care Outcomes Registry (APCOR) holds identified clinical data from individuals who have received palliative care across Australia. This data is submitted by participating hospitals and palliative care services to support research and drive improvements in care quality. Originally established as a longitudinal dataset capturing repeated clinical assessments, APCOR has evolved into a formal clinical quality registry. It contains a curated version of the PCOC quality improvement dataset and includes standardised information on patient demographics, diagnoses, symptom burden, functional status, care settings, and outcomes. In addition to supporting national quality improvement efforts, APCOR provides a governed pathway for the release of data to approved external third parties, enabling ethically responsible research and analysis that advances palliative care knowledge and practice. 

 

Applicant Responsibilities

 

  1. People accessing APCOR data are responsible for ensuring appropriate security for the storage of any material, confidential or otherwise, held in any format including on computing systems.
  2. A date for data disposal must be included in any request for access to data.
  3. The data will be provided as de-identified as posisble, to still meet the project needs. No attempt will be made to re‐identify individuals in the data provided by the APCOR.
  4. For research projects, ethical approvals must be provided prior to the release of data.
  5. For research projects, a schedule for the reporting and dissemination of results must be included in the submitted project outline.
  6. For research proposals, a copy of the Human Research Ethics Committee (HREC) annual progress report and acknowledgement must be submitted to the APCOR (apcor-coord@uow.edu.au).

 

Please review PCOC Publications, Approved projects and Requests under consideration prior to submitting a data request.

Requests for APCOR data for Quality Improvement projects may follow simplified review process.

A step-by-step guide on how to apply for access to the APCOR data:

Access the Approved projects and Requests under consideration.

Access to the following documents is available using the provided links:

Once the relevant documents have been reviewed, please submit an Expression of Interest to PCOC using the EOI Form.

PCOC will respond to the EOI within 15 business days. 

If support is received to complete a full application for data access, the Registry Coordinator will send a PCOC Data Release Application Form for completion. The application form and the ethics HREA form (draft or submitted) need to be received at least 4 weeks prior to the Data Release Committee meeting to allow time for an internal review and any required amendments.

Based on the feedback provided by the Registry Coordinator, complete any requested amendments to the PCOC Data Release Application Form and re-submit.

All research projects must undertake appropriate applications for ethics and governance approval and provide copies of the approved documentation and approval letter(s) prior to PCOC data being released.

Different levels of approvals are required depending on the data being requested. For more information, refer to the APCOR: Data Access and Release Guidelines or contact the Registry Coordinator.

Once the application has been accepted by the Registry Coordinator, it will be submitted to the PCOC Data Release Committee for review at the next scheduled meeting.

The PCOC Data Release Committee meets three (3) times per year. The PCOC Data Release Committee will review all of the documents and make a recommendation to the Data Guardian, who will approve or deny the data release request. The Registry Coordinator will contact the applicant with the outcome of the review.

Some quality improvement projects will not need to be reviewed by the Data Release Committee and will go straight to the Data Guardian for review. 

Once the application has been approved by the Data Guardian, the Registry Coordinator will send the Data Release Agreement. This needs to be signed before the data will be released.

The data extract from the APCOR will be provided to the applicant approximately 4 weeks after receipt of the signed Data Release Agreement.

Data variables will be extracted into a CSV file by the PCOC Data Scientist and Data Manager. For unit record requests, the file will be encrypted and the file protected with a password. The file will be sent electronically to the applicant using a secure data transfer mechanism. The password to access the file will be delivered separately, via telephone, person-to-person. The applicant will use the password to open the file and then unencrypt the data in the file. 

Before submitting a manuscript to a peer-reviewed journal, applicants must provide a copy to the Registry Coordinator at apcor-coord@uow.edu.au to ensure appropriate use and interpretation of APCOR data. Once published, the full reference must also be shared with APCOR. This may be put on the APCOR website. Abstracts submitted to conferences should likewise be provided. 

Instructions for acknowledging and citing APCOR in publications are outlined in the APCOR Data Access and Release Guidelines.