Developing an Advanced Data System For Aboriginal People With Cancer in South Australia (Phase 1) and Their Experiences With Cancer and Cancer Services (Phase 2)

This pilot explores data around access, cultural safety and patient’s perspectives of their care to produce narratives of Aboriginal cancer experience, whilst developing and testing a methodology, and exploring the issues and methods around linking coded narratives with health outcome data.

OVERVIEW

In parallel with the ongoing development and “road testing” of a cancer data system in South Australia (Cancer Registry) for the Aboriginal and Torres Strait Islander population (Phase 1, being led by Professor Roder at the University of South Australia), Phase 2 which is being undertaken by SAHMRI and led by Professor Alex Brown will be:

·To develop and pilot test a methodology for gathering qualitative data around access, cultural safety and patient’s perspectives of their care to produce narratives of Aboriginal cancer experience; and

·To explore the issues and methods around linking the coded narratives to health outcome data.

Phase 1, which is the ongoing development of the cancer registry for Aboriginal and Torres Strait Islander peoples, will:

·Enable targeted interventions at areas of most acute need and monitor progress;

·serve as an exemplar data system for other jurisdictions

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 Aboriginal 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 Aboriginal 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 Aboriginal community.

PROJECT PARTNERS

  • University of South Australia
  • Professor David Roder, University of South Australia
  • Dr Margaret Cargo, University of South Australia
  • South Australian Cancer Clinical Network

Senior Research Fellow: Paul Yerrell - paul.yerrell@sahmri.com or 08 8116 4457

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Key Partners
SAHMRI is located on the traditional lands of the Kaurna Nation.

The SAHMRI community acknowledges and respects the traditional owners, the family clans who are the Kaurna Nation from the Adelaide Plains region of South Australia. We acknowledge the clans of the Kaurna Nation and the sacred knowledge they hold for their country. We pay our respects to the Kaurna Nation, their ancestors and the descendants of these living family clans today.