Skip to content

Key resources

  • Bibliography
    Bibliography
  • Health promotion
    Health promotion
  • Health practice
    Health practice
  • Yarning places
    Yarning places
  • Programs
    Programs
  • Organisations
    Organisations
  • Conferences
    Conferences
  • Courses
    Courses
  • Funding
    Funding
  • Jobs
    Jobs
Australian Indigenous HealthBulletin
 
  • Home
    • » Key resources and services
      • » Programs and projects
        • » 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)

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)

 

Overview

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

Contacts

South Australian Health Medical Research Institute
Senior Research Fellow
Paul Yerrell
PO Box 11060
Adelaide SA 5001
Ph: (08) 8116 4457
Email: paul.yerrell@sahmri.com

Links

 
Last updated: 3 March 2014
 
Return to top