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Cancer in NSW Aboriginal Peoples - Completeness and quality of Aboriginal status data on the NSW Central Cancer Registry

To be able to make informed decisions about service provision for Aboriginal peoples, we need accurate and complete collection and recording of health information on Aboriginal and Torres Strait Islander peoples in NSW. Historically, there has been limited health information about Aboriginal peoples, including cancer statistics, due to under-recording of Aboriginal status in administrative health data collections.

Over the past decade or so, there have been a range of initiatives to improve the recording of Aboriginal status and much of this work has now flowed on to cancer statistics. The Cancer Institute NSW initiated this report to assess the current status in recording of Aboriginality on the NSW Central Cancer Registry (CCR), with a view to using cancer statistics to report more comprehensively on cancer in Aboriginal peoples in NSW. It includes an assessment of the quality and completeness of Aboriginal status data.

Overall, the collection and recording of Aboriginal status on the CCR has improved substantially over time: by 1999 only 13 per cent of people with cancer on the registry had a missing Aboriginal status, compared to more than 80 per cent in the early 1980s. While improvements in health system recording of Aboriginal status have contributed, especially from 1996 to 1999, much of the improvement in recording is attributable to retrospective coding from death notifications.

Cancer in NSW Aboriginal peoples: completeness and quality of Aboriginal status data on the NSW Central Cancer Registry is the first of two reports about cancer in Aboriginal peoples in NSW. This report assesses the current status in recording of Aboriginality on the NSW Central Cancer Registry. Our second report estimates the cancer incidence, mortality and survival for Aboriginal peoples diagnosed with and treated for cancer in NSW.