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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

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 sys...

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Autores principales: Yerrell, Paul Henry, Roder, David, Cargo, Margaret, Reilly, Rachel, Banham, David, Micklem, Jasmine May, Morey, Kim, Stewart, Harold Bundamurra, Stajic, Janet, Norris, Michael, Brown, Alex
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5223717/
https://www.ncbi.nlm.nih.gov/pubmed/28011808
http://dx.doi.org/10.1136/bmjopen-2016-012505
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author Yerrell, Paul Henry
Roder, David
Cargo, Margaret
Reilly, Rachel
Banham, David
Micklem, Jasmine May
Morey, Kim
Stewart, Harold Bundamurra
Stajic, Janet
Norris, Michael
Brown, Alex
author_facet Yerrell, Paul Henry
Roder, David
Cargo, Margaret
Reilly, Rachel
Banham, David
Micklem, Jasmine May
Morey, Kim
Stewart, Harold Bundamurra
Stajic, Janet
Norris, Michael
Brown, Alex
author_sort Yerrell, Paul Henry
collection PubMed
description 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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spelling pubmed-52237172017-01-13 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 Henry Roder, David Cargo, Margaret Reilly, Rachel Banham, David Micklem, Jasmine May Morey, Kim Stewart, Harold Bundamurra Stajic, Janet Norris, Michael Brown, Alex BMJ Open Oncology 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. BMJ Publishing Group 2016-12-23 /pmc/articles/PMC5223717/ /pubmed/28011808 http://dx.doi.org/10.1136/bmjopen-2016-012505 Text en Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/ This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/
spellingShingle Oncology
Yerrell, Paul Henry
Roder, David
Cargo, Margaret
Reilly, Rachel
Banham, David
Micklem, Jasmine May
Morey, Kim
Stewart, Harold Bundamurra
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
title Cancer Data and Aboriginal Disparities (CanDAD)—developing an Advanced Cancer Data System for Aboriginal people in South Australia: a mixed methods research protocol
title_full Cancer Data and Aboriginal Disparities (CanDAD)—developing an Advanced Cancer Data System for Aboriginal people in South Australia: a mixed methods research protocol
title_fullStr Cancer Data and Aboriginal Disparities (CanDAD)—developing an Advanced Cancer Data System for Aboriginal people in South Australia: a mixed methods research protocol
title_full_unstemmed Cancer Data and Aboriginal Disparities (CanDAD)—developing an Advanced Cancer Data System for Aboriginal people in South Australia: a mixed methods research protocol
title_short Cancer Data and Aboriginal Disparities (CanDAD)—developing an Advanced Cancer Data System for Aboriginal people in South Australia: a mixed methods research protocol
title_sort cancer data and aboriginal disparities (candad)—developing an advanced cancer data system for aboriginal people in south australia: a mixed methods research protocol
topic Oncology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5223717/
https://www.ncbi.nlm.nih.gov/pubmed/28011808
http://dx.doi.org/10.1136/bmjopen-2016-012505
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