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. 2016 Dec 23;6(12):e012505.
doi: 10.1136/bmjopen-2016-012505.

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

Paul Henry Yerrell  1   2 , David Roder  3 , Margaret Cargo  2 , Rachel Reilly  1   2 , David Banham  1 , Jasmine May Micklem  1 , Kim Morey  1 , Harold Bundamurra Stewart  1 , Janet Stajic  1 , Michael Norris  1 , Alex Brown  1   2 ; CanDAD Aboriginal Community Reference Group and CanDAD Investigators
Collaborators, Affiliations

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

Paul Henry Yerrell et al. BMJ Open. .

Abstract

Introduction: In 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 analysis: The 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 dissemination: The 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.

Keywords: Data linkage; Indigenous Health; ONCOLOGY; QUALITATIVE RESEARCH.

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Conflict of interest statement

Conflicts of Interest: None declared.

Figures

Figure 1
Figure 1
Governance Structure of Cancer Data and Aboriginal Disparities (CanDAD), following the South Australian Aboriginal Research Accord.
Figure 2
Figure 2
Outline of the process from de-identified service and patient outcome data to cohort members to ACaDs. ACaDs, Advanced Cancer Data System; NT, Northern Territory; OACIS, Open Architecture Clinical Information System; SA, South Australia.
Figure 3
Figure 3
Cancer pathway mapping tool.
See this image and copyright information in PMC

References

    1. Australian Institute of Health and Welfare. The health and welfare of Australia's Aboriginal and Torres Strait Islander peoples. Cat. no. IHW 147 Canberra: Australian Institute of Health and Welfare, 2015.
    1. Australian Institute of Health and Welfare. Cancer in Australia: an overview. Cat. no. CAN 75 Canberra: Australian Institute of Health and Welfare, 2014.
    1. Roder D. Comparative cancer incidence, mortality and survival in indigenous and non-indigenous residents of South Australia and the Northern Territory. Cancer Forum 2005;29:7–9.
    1. Chong A, Roder D. Exploring differences in survival from cancer among indigenous and non-indigenous Australians: implications for health service delivery and research. Asian Pac J Cancer Prev 2010;11:953–61. - PubMed
    1. Hall SE, Bulsara CE, Bulsara MK et al. Treatment patterns for cancer in Western Australia: does being indigenous make a difference? Med J Aust 2004;181:191–4. - PubMed

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