According to an article in BJU International, the State of Victoria, Australia, has initiated development of what appears to be a well-constructed, pilot, prostate cancer registry (PCR). Good for them!
Evans et al. report that this PCR has been set up based on recognized, international operating principles for clinical registries. (Well-established operating principles exist both within Australia and internationally to provide guidance on how to establish clinical registries of this type.)
The initial goal of this PCR will be to monitor the quality of care provided to men diagnosed with prostate cancer. It will collect data on eligible men of > 18 years of age, diagnosed with prostate cancer at a series of contributing hospitals in Victoria, Australia, whose diagnosis is confirmed by histopathology report notified to the Victorian Cancer Registry.
A steering committee was initially established, with the responsibility to:
- Determine the minimum set of data to be collected
- Select quality indicators to be reported back to clinicians
- Identify the most effective recruitment strategy, and
- Provide a governance structure for data requests; collection, analysis, and reporting of data; and managing outliers.
The steering committee has identified a minimum data set of 72 data items to be collected by the PCR. This will enable registry managers to collect and report data that can be used to monitor 10 quality indicators over time. Outcome measures will be risk adjusted according to an established risk stratification model.
Recruitment of patients into the PCR will occur concurrently with mandatory notification of diagnosis to the State of Victoria?s cancer registry, and the PCR will apply an opt-out consent process to maximize recruitment.?The data collection approach is to be standardized, using a hybrid of data linkage and manual collection, and data collection forms are to be electronically scanned into the PCR.? A data access policy and escalation policy for mortality outliers has also been developed.
It is high time that a major regional body established such a well-coordinated and sophisticated registry in order to monitor patient outcomes and quality of care (regardless of treatment type). It is regrettable that this hasn?t already been carried out in the USA, but maybe the fact that an Australian state has taken this step will motivate others to follow their lead.
Filed under: Diagnosis, Living with Prostate Cancer, Management, Treatment Tagged: | Australia, clinical, registry, Victoria
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