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Research and data

Research and data

PCOC data is reported to member organisations, states and territories, and nationally. It is used for research important to the palliative care sector. The dataset includes information from palliative care services in all states and territories, covering both inpatient and community settings.

PCOC collaborates with researchers on studies, programs, and grants. Data can be accessed through a Data Access Application form (pdf).

How to access PCOC data for research

PCOC is committed to advancing palliative care for the benefit of patients, their carers, families and health systems.

There are three ways to complete research with PCOC:

  1. Request a dataset from PCOC and complete research independent of PCOC involvement. PCOC reviews and approves any resulting outputs from the research that uses the PCOC dataset, before publication. This review does not involve any substantive contribution to the development of the research, but rather a review for risks to the target population and the PCOC program.
  2. Consult with PCOC on aspects of the research project
  3. Invite PCOC to be part of the research team

Steps involved in applying for PCOC data

For those wishing to access information in PCOC’s longitudinal database, four steps are usually involved in making an application for the data:

  1. The applicant completes and submits a PCOC data access application form (pdf). Submitting evidence of ethical approval granted for the study is useful at this point.
  2. The application is reviewed by PCOC, including review by PCOC’s Chief Investigators for their approval.
  3. If approved, the applicants (project investigators) sign and return a PCOC user agreement form (pdf).
  4. The data set is prepared and provided to the researchers.

PCOC is updating its data policy. Please contact us if you require any information or access the PCOC Data Quality Statement

Outcomes and benchmarks

PCOC worked with participating services in 2009 to develop our first set of national outcome measures. These were the subject of extensive consultation at three workshops held in Brisbane, Sydney and Adelaide in May and June 2009 to which all participating services were invited.

In December 2009, national benchmarks (standards of performance that all services are measured against) were formally adopted for each measure. After feedback from services attending the 2012 PCOC benchmarking workshops, the benchmark for Outcome Measure 2 (time in the unstable phase) was revised, with three benchmarks amalgamated into one (for further information, download the document Time in the unstable phase - revised benchmark (pdf). 

Following on from the implementation of the Version 3 dataset, in 2014, Benchmark 1 was changed from ‘Time from referral to first contact’ to ‘Time from date ready for care to episode start’.

In 2015, PCOC introduced three new patient outcome measures and associated benchmarks. These three outcome measures relate to distress due to fatigue and breathing problems (both rated by the SAS) and family / carer problems (as rated by the PCPSS). The purpose of benchmarking is to drive palliative care service innovation and provide participating services with the opportunity to compare their service to other services from across the country. 

PCOC benchmarks:

Time from date ready for care to episode start reports responsiveness of palliative care services to patient needs. This benchmark was set following feedback and subsequent consultation with PCOC participants. Service providers acknowledge that, whilst there is wide variation in the delivery of palliative care across the country, access to palliative care should be measured based on patient need rather than service availability. As a result, services operating five days a week (Monday to Friday) are not distinguished from services operating seven days a week (all services are being benchmarked together).

Benchmark 1:  90% of patients must have their episode commence on the day of, or the day following date ready for care.

Time in the unstable phase is calculated as the difference between the phase start date and the phase end date.

Benchmark 2:   90% of patients are in the unstable phase for 3 days or less.

Change in symptoms or problems is calculated by the difference in assessment from the beginning of a phase to the end of phase, and is calculated using the measures from both the Palliative Care Problem Severity Score (PCPSS) and Symptom Assessment Scale (SAS).

Pain (PCPSS & SAS)

Change in pain is calculated by the difference in pain score from the beginning of a phase to the end of phase and is calculated using the pain measures in the Palliative Care Problem Severity Score (PCPSS) and Symptom Assessment Scale (SAS).

Benchmark 3.1:   At least 90% of patients with absent or mild PCPSS pain at the beginning of their phase of palliative care have absent or mild PCPSS pain at the end of the phase.

Benchmark 3.2:   At least 60% of patients with moderate or severe PCPSS pain at the beginning of their phase of palliative care have absent or mild PCPSS pain at the end of the phase.

Benchmark 3.3:   At least 90% of patients with absent or mild SAS pain at the beginning of their phase of palliative care have absent or mild SAS pain at the end of the phase.

Benchmark 3.4:   At least 60% of patients with moderate or severe SAS pain at the beginning of their phase of palliative care have absent or mild SAS pain at the end of the phase.

Fatigue (SAS)

Benchmark 3.5:   At least 90% of patients with absent or mild fatigue at the beginning of their phase of palliative care have absent or mild fatigue at the end of the phase.

Benchmark 3.6:   At least 60% of patients with moderate or severe fatigue at the beginning of their phase of palliative care have absent or mild fatigue at the end of the phase.

Breathing problems (SAS)

Benchmark 3.7:   At least 90% of patients with absent or mild breathing problems at the beginning of their phase of palliative care have absent or mild breathing problems at the end of the phase.

Benchmark 3.8:   At least 60% of patients with moderate or severe breathing problems at the beginning of their phase of palliative care have absent or mild breathing problems at the end of the phase.

Family/carer problems (PCPSS)

Benchmark 3.9:   At least 90% of patients with absent or mild family / carer problems at the beginning of their phase of palliative care have absent or mild family / carer problems at the end of the phase.

Benchmark 3.10:   At least 60% of patients with moderate or severe family / carer problems at the beginning of their phase of palliative care have absent or mild family / carer problems at the end of the phase. 

Change in symptoms relative to the national average measures the mean change in symptoms on the PCPSS/SAS that are adjusted for both phase and for the symptom score at the start of each phase. This measure allows services to compare the change in symptom score for ‘like’ patients i.e. patients in the same phase who started with the same level of symptom. Eight symptoms are included in the measure:

  • PCPSS pain, other symptoms, psychological/spiritual, family/carer.
  • SAS pain, nausea, bowel problems, breathing problems.

The measure is referred to as the X-CAS, with X representing the fact that multiple symptoms are included and CAS is an abbreviation for Casemix Adjusted Score.

A positive score indicates that a service is performing above the baseline national average and a negative score that it is below the baseline national average.

The baseline national average has been calculated based on the period January to June 2014. Each service is measured against this baseline national average for each 6-month reporting period. This allows each service to measure any change in their symptom management over time.

© PCOC UOW 2020. The intellectual property associated with a suite of resources on this website is owned by the Palliative Care Outcomes Collaboration (PCOC), University of Wollongong. PCOC has placed resources in the public domain and is happy for others to use them without charge, modification or development. These resources cannot be modified or developed without the consent of the University.

PCOC is a national palliative care project funded by the Australian Government Department of Health and Aged Care.