Poster Presentation Lowitja Institute International Indigenous Health and Wellbeing Conference 2016

The Cancer Data and Aboriginal Disparities (CanDAD) journey: The view of Aboriginal cancer survivors and activists (#341)

Sandra Miller 1 , Neville Fazulla 1 , Roz Weetra 1 , Paul Yerrell 1 , David Banham 1 , Rachel Reilly 1 , Jasmine Micklem 1 , Harold Stewart 1 , Margaret Cargo 2 , David Roder 2 , Alex Brown 1
  1. South Australian Health and Medical Research Institute, Adelaide, SA, Australia
  2. Centre for Population Health, University of South Australia, Adelaide, SA, Australia

In 2006, the Perko Ngurratti Healing Messages Cancer Forum, organised by the Aboriginal Health Council of South Australia (SA), Cancer Council SA, and the Aboriginal Women Survivors of Cancer Group informed the production of the Aboriginal and Torres Strait Islander Companion Document to the SA Statewide Cancer Control Plan 2010-2015. Seven years on, the CanDAD Partnership Project commenced the development of an Advanced Cancer Data System (ACaDS), which is capable of capturing both epidemiological and narrative data amongst the Aboriginal population.

ACaDS integrates unit record, administrative data from the SA Population Cancer Registry, hospital inpatient collections, radiotherapy, cancer screening and the Pharmaceutical Benefits Scheme for a cohort of Indigenous people with cancer diagnoses from 1990 to 2010, matched with a non-Indigenous cohort by primary site, sex, age and year at diagnosis. Analyses examine the extent to which demographic attributes, cancer stage and survival vary between the cohorts.

Narratives from Aboriginal people with cancer, survivors, their families, carers and service providers have been collected; patient stories being mapped using tools adapted to reflect the stages of a cancer pathway outlined in state and national cancer control plans.

This presentation explores the current issues/themes supporting Indigenous cancer control advocacy to support equitable and efficient cancer care among Indigenous Australians:

  • Cultural understanding in line with South Australian Research Accord
  • Community support and political will through the governance of an Aboriginal Community Reference Group (ACoRG)
  • Profiling narratives of experience
  • Systemic information collection and analysis of population and health system data

Individually these areas are limited but together they provide the opportunity to form an organic and dynamic case for change.

CanDAD provides such an opportunity for equipping cancer control advocacy for the benefit of Aboriginal South Australians, by its contributions to the 2016-2020 Companion Document and the associated Community involvement.

In this presentation, ACoRG members reflect on this claim: describing their experience of CanDAD; noting how such research, both epidemiological and narrative, builds and enhances opportunities for partnerships across research, policy and Community; and profiling the refinement of cancer care for Indigenous people now and into the future.