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
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.
BMJ Open. 2016 Dec 23;6(12):e012505. doi: 10.1136/bmjopen-2016-012505.
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.
在澳大利亚，与癌症相关的死亡率方面，原住民和托雷斯海峡岛民比非原住民澳大利亚人承受着更大的负担。癌症数据与原住民差异项目旨在开发并测试一个综合、全面的癌症监测与监督系统，该系统能够纳入流行病学数据和叙述性数据，以解决差异问题并倡导临床系统变革。
高级癌症数据系统将整合从南澳大利亚人口癌症登记处常规收集的单位记录数据以及一系列其他数据源，用于对1990年至2010年期间被诊断患有癌症的原住民进行回顾性队列研究。一个随机抽取的非原住民队列将按原发性癌症部位、性别、年龄和诊断年份进行匹配。交叉列表和回归分析将检验各队列在人口统计学特征、癌症分期和生存率方面的差异程度。将收集并使用患者路径映射和主题分析方法分析来自患有癌症的原住民及其家人、护理人员和服务提供者的叙述。叙述中的陈述将构建一个概念映射过程，对问题进行评级、分类和排序并确定优先次序，重点关注重要性和可行性问题，同时还将开发一个实时的原住民癌症体验指标，以便与高级癌症数据系统中的流行病学数据进行持续关联。原住民社区参与是该项目的基础。
该研究已获得相关地方和国家伦理委员会的批准。研究结果将在本地和国际同行评审期刊以及会议报告中发表。此外，该研究将为各合作组织的知识转化活动提供数据，并直接纳入全州癌症控制计划。它将提供一种机制，用于监测和评估这些文件中建议的实施情况。
