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https://hdl.handle.net/2440/103915
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Type: | Journal article |
Title: | Cancer data and Aboriginal disparities (CanDAD)-developing an Advanced Cancer Data System for Aboriginal people in South Australia: a mixed methods research protocol |
Author: | Henry Yerrell, P. Roder, D. Cargo, M. Reilly, R. Banham, D. May Micklem, J. Morey, K. Bundamurra Stewart, H. Stajic, J. Norris, M. Brown, A. |
Citation: | BMJ Open, 2016; 6(12):e012505-1-e012505-9 |
Publisher: | BMJ Publishing Group |
Issue Date: | 2016 |
ISSN: | 2044-6055 2044-6055 |
Statement of Responsibility: | Paul Henry Yerrell, David Roder, Margaret Cargo, Rachel Reilly, David Banham, Jasmine May Micklem, Kim Morey, Harold Bundamurra Stewart, Janet Stajic, Michael Norris, Alex Brown, On behalf of the CanDAD Aboriginal Community Reference Group and CanDAD Investigators |
Abstract: | Introduction: In Australia, Aboriginal and Torres Strait Islander People carry a greater burden of cancerrelated 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. |
Keywords: | Data linkage |
Rights: | Copyright status unknown. 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/ |
DOI: | 10.1136/bmjopen-2016-012505 |
Grant ID: | http://purl.org/au-research/grants/nhmrc/1072243 |
Published version: | http://dx.doi.org/10.1136/bmjopen-2016-012505 |
Appears in Collections: | Aurora harvest 3 Public Health publications |
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hdl_103915.pdf | Published version | 1.19 MB | Adobe PDF | View/Open |
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