Cancer data and aboriginal disparities (CanDAD)-developing an Advanced Cancer Data System for Aboriginal people in South Australia: A mixed methods research protocol

Paul Yerrell, David Roder, Margaret CARGO, Rachel Reilly, David Banham, Jasmine Micklem, Kim Morey, Harold Stewart, Janet Stajic, Michael Norris, Alex Brown

Research output: Contribution to journalArticle

8 Citations (Scopus)

Abstract

Introduction 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.

Methods and analysis 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.

Ethics and dissemination 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
Original languageEnglish
Pages (from-to)1-9
Number of pages9
JournalBMJ Open
Volume6
DOIs
Publication statusPublished - 2016
Externally publishedYes

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South Australia
Information Systems
Research
Neoplasms
Ethics Committees
Translational Medical Research
Information Storage and Retrieval
Ethics
Caregivers
Registries
Regression Analysis

Cite this

Yerrell, Paul ; Roder, David ; CARGO, Margaret ; Reilly, Rachel ; Banham, David ; Micklem, Jasmine ; Morey, Kim ; Stewart, Harold ; Stajic, Janet ; Norris, Michael ; Brown, Alex. / Cancer data and aboriginal disparities (CanDAD)-developing an Advanced Cancer Data System for Aboriginal people in South Australia: A mixed methods research protocol. In: BMJ Open. 2016 ; Vol. 6. pp. 1-9.
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Cancer data and aboriginal disparities (CanDAD)-developing an Advanced Cancer Data System for Aboriginal people in South Australia: A mixed methods research protocol. / Yerrell, Paul; Roder, David; CARGO, Margaret; Reilly, Rachel; Banham, David; Micklem, Jasmine; Morey, Kim; Stewart, Harold; Stajic, Janet; Norris, Michael; Brown, Alex.

In: BMJ Open, Vol. 6, 2016, p. 1-9.

Research output: Contribution to journalArticle

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AU - Yerrell, Paul

AU - Roder, David

AU - CARGO, Margaret

AU - Reilly, Rachel

AU - Banham, David

AU - Micklem, Jasmine

AU - Morey, Kim

AU - Stewart, Harold

AU - Stajic, Janet

AU - Norris, Michael

AU - Brown, Alex

PY - 2016

Y1 - 2016

N2 - Introduction 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.Methods and analysis 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.Ethics and dissemination 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

AB - Introduction 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.Methods and analysis 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.Ethics and dissemination 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

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JO - BMJ Open

JF - BMJ Open

SN - 2044-6055

ER -