Cancer Data and Aboriginal Disparities (CanDAD)—developing an Advanced Cancer Data System for Aboriginal people in South Australia: a mixed methods research protocol

Abstract

IntroductionIn Australia, Aboriginal and Torres Strait Islander People carry a greater burden of cancer-related mortality than non-Aboriginal Australians. The Cancer Data and Aboriginal Disparities Project aims to develop and test an integrated, comprehensive cancer monitoring and surveillance system capable of incorporating epidemiological and narrative data to address disparities and advocate for clinical system change.Methods and analysisThe Advanced Cancer Data System will integrate routinely collected unit record data from the South Australian Population Cancer Registry and a range of other data sources for a retrospective cohort of indigenous people with cancers diagnosed from 1990 to 2010. A randomly drawn non-Aboriginal cohort will be matched by primary cancer site, sex, age and year at diagnosis. Cross-tabulations and regression analyses will examine the extent to which demographic attributes, cancer stage and survival vary between the cohorts. Narratives from Aboriginal people with cancer, their families, carers and service providers will be collected and analysed using patient pathway mapping and thematic analysis. Statements from the narratives will structure both a concept mapping process of rating, sorting and prioritising issues, focusing on issues of importance and feasibility, and the development of a real-time Aboriginal Cancer Measure of Experience for ongoing linkage with epidemiological data in the Advanced Cancer Data System. Aboriginal Community engagement underpins this Project.Ethics and disseminationThe research has been approved by relevant local and national ethics committees. Findings will be disseminated in local and international peer-reviewed journals and conference presentations. In addition, the research will provide data for knowledge translation activities across the partner organisations and feed directly into the Statewide Cancer Control Plan. It will provide a mechanism for monitoring and evaluating the implementation of the recommendations in these documents.

Aboriginal experiences of cancer and care coordination: Lessons from the Cancer Data and Aboriginal Disparities (CanDAD) narratives

“…Data were analysed in 2 ways. The manifest content of the narratives was entered onto a “cancer pathway mapping tool.” The adaptation and use of the tool have been described elsewhere . The tool provided a practical way to record multiple stakeholder perspectives of where gaps and failures occurred for Aboriginal people, relative to an “optimal” cancer care pathway as defined by current health system policies .…”

“…The Cancer Data and Aboriginal Disparities (CanDAD) project was developed in response to the significant and increasing disparity in cancer mortality between Aboriginal and other Australians in South Australia (SA) . Studies conducted nationally indicate that the drivers of this disparity are likely to be varied and include a higher rate of exposure to risk factors including but not limited to smoking, lower uptake of cancer screening and higher rates of comorbidity .…”

Developing a comorbidity index for comparing cancer outcomes in Aboriginal and non-Aboriginal Australians

“…The SACR also collects mortality by routine linkage to South Australian death files and for deaths occurring outside of South Australia, to the National Death Index at the Australian Institute of Health and Welfare. Record linkage of data from the SACR, ISAAC, and BDM was conducted by SANT Data Link, with supplementary linkage to inpatient data undertaken by the SA Government Epidemiology Branch [ 18 ].…”

“…All registered cancer cases in Aboriginal people diagnosed between 1990 and 2010 were included in this study. Aboriginal status of cases was checked through cross-referencing with other databases to reduce classification bias [ 18 , 19 ]. Emphasis was placed on specificity at the expense of sensitivity to ensure that non-Aboriginal people were not misclassified as Aboriginal.…”

Identifying research priorities to improve cancer control for Indigenous Australians

“…6 A key directive from this roundtable was for a national, coordinated, collaborative, priority-driven, Indigenousled research effort to improve Indigenous cancer outcomes. 6 9 Other Australian initiatives include the development of an integrated cancer monitoring and surveillance system to improve cancer care for Aboriginal people in South Australia, which has anticipated relevance for other regions 10 ; the use of social inclusion theory to improve cancer care 11 ; and the assessment of patient navigator programs to improve diagnosis and treatment experiences. 12 The capacity to monitor the health of Indigenous populations in Australia and other high-income countries is markedly hampered by the paucity of Indigenous identifiers in administrative datasets and cancer registries.…”