Data Set and Data Collection

The Palliative Care Outcomes Collaboration (PCOC) data set captures demographic, setting and clinical assessment information for palliative care patients across Australia. This data collection supports a common clinical language in palliative care. PCOC data are obtained from clinical assessments where this clinical language is used in routine clinical practice.

Unit of counting, case mix and measuring outcomes

Central to benchmarking is the need to compare populations of different health services. To achieve this, a common language or unit of counting is required. In PCOC this is the palliative care phase. Phase is a classification of the patient’s stage of illness. Phases occur within an episode of palliative care. An episode is defined by the location of the patient and starts whenever the setting of care changes. A patient will have one or more episodes of care (see figure below). 

PCOC Architecture

The PCOC data set captures information at three levels:

Patient level information describes demographics such as indigenous status, sex, preferred language and country of birth.
Episode level information describes the setting of palliative care service provision. It also includes information relating to the facility or organisation that has referred the patient, how an episode starts and ends, and the setting in which the patient died.
Phase level information describes the clinical condition of the patient during the episode, using five clinical assessment tools. These relate to the phase of illness, the patient’s functional status and performance, pain and other common symptoms, the patient’s psychological / spiritual problems and family / carer issues.
The current version of the data set (version 3) was implemented in July 2013 following broad consultation conducted during 2011 with service providers and representatives of peak organisations from across Australia.

Protocol for data collection

Clinical assessments are collected at every patient encounter. For patients in hospital, this is daily and at phase change. For patients at home, the assessments are collected at each encounter, in-person or by telephone/telehealth or other, and at phase change. The same protocol applies regardless of model of care. Demographic and episode of care (setting) information is collected at the start and end of each episode. Clinicians record the PCOC clinical assessment information in two main ways:

  • on paper forms that are stored with the patients’ medical record. Data entry personnel (clinicians, ward clerks or administrative staff) then enter this information into PCOC’s required ‘phase level’ format.
  • directly into an electronic patient record. The systems then implement an algorithm to convert this assessment level data into PCOC’s required phase level data.

Data validation and quality checking

Palliative care services participating in PCOC submit data at the following times:

  • January - February (for the previous July – December reporting period)

  • July - August (for the previous January – June reporting period)

Data extracts are loaded into the database for the purpose of data validation and quality checking. PCOC conducts a review and data cleaning process before undertaking analysis of the data. National benchmarks are calculated and individualised reports are produced for each participating service. State and national reports are also generated and disseminated.

Supporting documents

Information for clinicians

Information for developers

 

Last reviewed: 11 May, 2018