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PCOC is a national collaboration delivered by a partnership between four universities; the Australian Health Services Research Institute (AHSRI) at the University of Wollongong (UOW), Queensland University of Technology (QUT), University of Western Australia (UWA) and the University of Technology Sydney (UTS).

As part of this collaboration, PCOC maintains a national longitudinal database of palliative care outcomes across settings of care and types of providers. The PCOC database comprises data describing more than 250,000 patients or residents, and one million phases of palliative care provided both within hospitals, patients’ homes and in residential aged care facilities. This longitudinal database provides a valuable resource for both PCOC and the wider health and scientific community to conduct research into palliative care.

Data submitted to and managed by PCOC is used for reporting, benchmarking and research into areas of importance to the palliative care sector. Services participating in PCOC are the original custodians of the data they supply to PCOC and retain ownership of the intellectual property relating to those data.

The national PCOC office, responsible for the PCOC National Longitudinal Database and routine reporting and analysis, is located within AHSRI at UOW. AHSRI is the custodian of the PCOC longitudinal database and owner of the intellectual property relating to the PCOC longitudinal database. AHSRI does not release any information that could identify an individual service participating in PCOC, unless provided with written consent from the service. Non-identifiable extracts from the PCOC longitudinal database can be released for use in research after approval of a formal application to PCOC.

Data set and data collection

PCOC’s data set captures demographic, setting and clinical assessment information for palliative care patients. This data collection supports a common clinical language in palliative care. PCOC data are obtained from clinical assessments where this clinical language is used as part of routine clinical practice.

Three data sets are available in PCOC. The three data sets are harmonised to ensure analysis across the data sets.

The three data sets are:

  • PCOC’s palliative care outcomes collection
  • PCOC’s aged care outcomes collection
  • PCOC’s profile collection (which spans settings, for example, inpatient settings, primary care settings and residential aged care facilities)

Download the PCOC Version 3.0 Data Dictionary and Technical Guidelines 1.2.0 (pdf)

 

Unit of counting

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 the PCOC outcomes collection this is the Palliative Care Phase. 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. For the outcomes collection, a patient may have one or more episodes of care and one or more palliative care phases. Download the PCOC architecture for a visual representation (pdf).

Three levels of information

For the palliative care outcomes collection, data is captured at three levels: the patient-level, episode-level and phase-level.

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. This information is derived from five clinical tools. These tools include measures that examine palliative care phase, the patient’s functional status and performance status, pain and other common symptoms, the patient’s psychological/spiritual problems and family/carer issues.

Protocol for data collection

Clinical assessments are collected at every patient encounter. For patients in hospital, this is collected daily and at phase change. For patients at home, the assessments are collected at each encounter (e.g. each visit), 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 ways:

  • It is collected using paper forms that are stored with the patient's medical record. Data entry personnel (clinicians, ward clerks or administrative staff) then enter this information into PCOC’s required ‘phase level’ format
  • The second way involves direct entry into an electronic patient record. The IT 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.

Unit of counting

Central to benchmarking is the need to compare populations of different services. To achieve this, a common language or unit of counting is required. In PCOC's RAC collection this is the palliative care phase. Palliative care phases can be bundled together to aid analysis. For the RAC collection the phases can be bundled within seminal events that occur during the resident’s receipt of palliative care.

Three levels of information

For PCOC's RAC collection, data is captured at three levels: the resident-level, event-level and assessment-level.

Resident-level information reflects an individual receiving interdisciplinary palliative care. Demographic information is collected at this level.

Event-level information reflects palliative care provision, including the circumstances surrounding its provision. The items collected at the event-level capture information about when the resident is identified as requiring palliative care, when they start palliative care, interruptions to their palliative care (for example, due to hospital transfers), when the interrupted palliative care recommences, when and where a resident dies, and their preferences for place of care and place of death.

The assessment-level information reflects the needs of the resident. This includes when and how their needs change. Assessment-level information describes the clinical condition of the resident during the episode of palliative care. This is derived from five clinical tools. These tools measure palliative care phase, the resident’s functional status and performance status, pain and other common symptoms, the resident’s psychological / spiritual problems and family / carer issues.

Protocol for data collection

Staff collect PCOC information as part of routine care. They record the PCOC clinical assessment information in two ways:

  • On paper forms that are stored with the resident’s file. Data entry personnel (clinicians, ward clerks or administrative staff) then enter this information into PCOC’s required format.
  • The second way involves direct entry into an electronic format. The IT systems then implement an algorithm to convert this information into PCOC’s required format.

Data validation and quality checking

Residential aged care facilities 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.

Two levels of information

The PCOC profile data collection consists of two levels of data collection: the patient-level and profile-level information.

Conceptually, the items collected at the patient-level represent key information inherent to the patient. These items generally do not change. This is because they mostly relate to patient demographics. Only one record for each patient is required within each organisation. Data at the profile-level describes the assessment information, which together forms the profile of the patient. This profile information is derived from five clinical tools. These tools measure palliative care phase, the patient’s functional status and performance status, pain and other common symptoms, the patient’s psychological / spiritual problems and family / carer issues.

Protocol for data collection

Staff collect PCOC information as part of routine care. They record the PCOC clinical assessment information in two ways:

  • It is collected using paper forms that are stored with the patient’s file. Data entry personnel (clinicians, ward clerks or administrative staff) then enter this information into PCOC’s required format.
  • The second way involves direct entry into an electronic format. The IT systems then implement an algorithm to convert this information into PCOC’s required format.

Data validation and quality checking

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.

palCentre is a new data entry software, customised for use by PCOC services.

palCentre allows services to enter data for analysis and reporting and promotes consistent terminology, processes and protocols among services participating in PCOC.

palCentre features include: 

  • a user-friendly interface for entering patient and assessment information
  • printable reports to track the patient’s journey
  • a streamlined process of data extraction and submission to the Secured Online Submission platform
  • the ability to review patients currently under the care of the service

Access the palCentre User Guide

Data application process

The PCOC longitudinal database provides a valuable resource for both PCOC and the wider health and scientific community to conduct research into palliative care. This is important especially in relation to advancing clinical and policy priorities.

Requests for data can be received from two types of applicants:

  1. researchers wishing to access information in PCOC’s longitudinal database
  2. representatives linked in with research specific to a registered PCOC site/s

The process of application differs depending on which group applies.

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.

Becoming familiar with PCOC’s data policy (pdf) before submitting your application is recommended.

 

How to complete research with PCOC

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

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 phasewas 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. 

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.

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