- A common clinical language
- Data collection
- Data validation and quality checking
- A national clinical quality registry for palliative care
- Data Policy and supporting documents
The Palliative Care Outcomes Collaboration (PCOC) dataset captures demographic, setting and clinical assessment information for palliative care patients across Australia. This dataset supports a common clinical language in palliative care and streamlines communication between palliative care providers. PCOC data are obtained from clinical assessments where this clinical language is used in routine clinical practice. The data obtained are used to measure and benchmark patient outcomes which inform and drive quality improvement initiatives.
The PCOC dataset 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 dataset (version 3) was implemented in July 2013 following broad consultation conducted during 2011 with service providers and representatives of peak organisations from across Australia.
Since 2006, PCOC has been successful in embedding the clinical assessment tools in the day-to-day clinical language and practice of palliative care. As a result, services are now using the PCOC assessment tools to systematically assess individual patient experiences and to develop plans of care that address patient need. This information is then recorded in the patient file each time an assessment is completed (not just when the phase changes). 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.
More information on the IT systems that support the collection of PCOC data can be found here.
As part of the PCOC cycle 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)
Submitting data to PCOC is usually an iterative process. An initial set of data extracts from a service are loaded into the database for the purpose of data validation and quality checking. Services receive a data quality report and are given the opportunity to correct their data (if required). Once this data is corrected by services, it is resubmitted to PCOC to undergo the same process. This process of data quality checking is repeated until the data is considered adequate.
After the cut-off date PCOC conducts a further 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.
In its capacity as a clinical quality registry, PCOC maintains a national longitudinal database of patient outcomes. In total, the PCOC database comprises data describing more than 750,000 phases of palliative care provided both within hospitals and patients’ homes. This longitudinal database provides a valuable resource for both PCOC and the wider health and scientific community to conduct research into palliative care.
Information for clinicians
Information for developers