title: Cancer Data and Aboriginal Disparities (CanDAD)-developing an Advanced Cancer Data System for Aboriginal people in South Australia: a mixed methods research protocol.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Wardliparingga Aboriginal Research Unit, South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia.|Centre for Population Health Research, University of South Australia, South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia.
authors.forename: Paul Henry
authors.initials: PH
authors.lastname: Yerrell
authors.affiliation: Cancer Epidemiology Group, Centre for Population Health Research, University of South Australia, South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia.
authors.forename: David
authors.initials: D
authors.lastname: Roder
authors.affiliation: Centre for Population Health Research, University of South Australia, South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia.
authors.forename: Margaret
authors.initials: M
authors.lastname: Cargo
authors.affiliation: Wardliparingga Aboriginal Research Unit, South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia.|Centre for Population Health Research, University of South Australia, South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia.
authors.forename: Rachel
authors.initials: R
authors.lastname: Reilly
authors.affiliation: Wardliparingga Aboriginal Research Unit, South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia.
authors.forename: David
authors.initials: D
authors.lastname: Banham
authors.affiliation: Wardliparingga Aboriginal Research Unit, South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia.
authors.forename: Jasmine May
authors.initials: JM
authors.lastname: Micklem
authors.affiliation: Wardliparingga Aboriginal Research Unit, South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia.
authors.forename: Kim
authors.initials: K
authors.lastname: Morey
authors.affiliation: Wardliparingga Aboriginal Research Unit, South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia.
authors.forename: Harold Bundamurra
authors.initials: HB
authors.lastname: Stewart
authors.affiliation: Wardliparingga Aboriginal Research Unit, South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia.
authors.forename: Janet
authors.initials: J
authors.lastname: Stajic
authors.affiliation: Wardliparingga Aboriginal Research Unit, South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia.
authors.forename: Michael
authors.initials: M
authors.lastname: Norris
authors.affiliation: Wardliparingga Aboriginal Research Unit, South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia.|Centre for Population Health Research, University of South Australia, South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia.
authors.forename: Alex
authors.initials: A
authors.lastname: Brown
mesh_terms: D066264:Datasets as Topic; D005260:Female; D006303:Health Services, Indigenous; D054624:Health Status Disparities; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000453:epidemiology*; D011159:Population Surveillance / Q000379:methods*; D012107:Research Design; D012189:Retrospective Studies; D013021:South Australia / Q000453:epidemiology; D000095283:Australian Aboriginal and Torres Strait Islander Peoples
keywords: Data linkage; Indigenous Health; ONCOLOGY; QUALITATIVE RESEARCH