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This two phase program aims to explore the data around access, cultural safety and patient’s perspectives of their care to produce narratives of Indigenous cancer experience. It focuses on developing and testing a methodology, and exploring the issues and methods around linking coded narratives with health outcome data. The two phases of the program will run parallel with the ongoing development and 'road testing' of a cancer data system (Cancer Registry) in South Australia (SA), for the Aboriginal and Torres Strait Islander population.
Phase one, (being led by Professor Roder at the University of South Australia) which is the ongoing development of the cancer registry for Aboriginal and Torres Strait Islander peoples, will:
Phase two which is being undertaken by South Australian Health Medical Research Institute (led by Professor Alex Brown) will be:
The longer-term outcome of this pilot work is to find a methodology for linking cancer registry data with coded narratives, which recognises and incorporates culturally sensitive and context-specific approaches, which acknowledge the timing of data collection, in relation patient journey, the privacy/confidentiality of patients heath records and stories of their experience, and the way de-identified data linkage can pinpoint the need for clinical and socio-economic changes at the patient, provider and system levels for the benefit of Indigenous people.
In recognition of the sensitivities involved in both interviewing vulnerable Aboriginal cancer patients and the ethical issues of narrative/health data links, this project will be working with a Steering Committee of mostly Indigenous stakeholders, including representation from the SA Aboriginal Health Council, the Aboriginal Health Branch of SA Health, the SA Cancer Clinical Network, and Cancer Council SA, and in consultation with the Indigenous community.
Abstract adapted from South Australian Health Medical Research Institute
South Australian Health Medical Research Institute
Senior Research Fellow
PO Box 11060
Adelaide SA 5001
Ph: (08) 8116 4457