Menzies School of Health Research, Charles Darwin University, Darwin 0810, Australia.
Cancer Australia, Surry Hills 2010, Australia.
Int J Environ Res Public Health. 2018 May 9;15(5):942. doi: 10.3390/ijerph15050942.
Indigenous Australians experience a substantially higher cancer mortality rate than non-Indigenous Australians. While cancer outcomes are improving for non-Indigenous Australians, they are worsening for Indigenous Australians. Reducing this disparity requires evidence-based and culturally-appropriate guidance. The purpose of this paper is to describe an initiative by Cancer Australia and Menzies School of Health Research (Menzies) to develop Australia’s first National Aboriginal and Torres Strait Islander Cancer Framework using a process of co-design with relevant stakeholders. The initiative was guided by three core principles: achieving policy-relevant evidence-based outcomes; engaging and maintaining trust with Indigenous Australians at every phase; and employing best-practice and appropriate research methods. Four components of research comprised the Framework development: evidence review; multifaceted stakeholder consultation and input; triangulation of findings; and direct stakeholder input in drafting and refining the Framework. The evidence review confirmed the increasing burden of cancer on Indigenous Australians, while stakeholder consultations facilitated comprehensive input from those with lived experience. The consultations revealed issues not identified in existing literature, and gave different emphases of priority, thus reinforcing the value of including stakeholder perspectives. This paper focuses primarily on documenting the methods used; findings are presented only in order to illustrate the results of the process. The published Framework is available at www.canceraustralia.gov.au; further description and analyses of findings from the consultations will be published elsewhere. The logistics inherent in large-scale consultation are considerable. However, the quality of data and the foundation for sustained partnership with stakeholders and knowledge translation vastly outweighed the challenges. The process of wide-ranging stakeholder consultation described in this paper offers a model for other areas of national and international Indigenous priority setting and policy and practice development that meets the needs of those most affected. The Framework, through the establishment of an agreed, shared and evidence-based agenda, provides guidance for jurisdictional cancer plans, optimal care pathways, and program and service planning for the multiple players across all levels of the health system.
澳大利亚原住民的癌症死亡率明显高于非原住民。虽然非原住民的癌症治疗效果正在改善,但原住民的情况却在恶化。要缩小这一差距,需要有循证且适合文化的指导。本文旨在描述澳大利亚癌症协会和梅恩兹健康研究学院(Menzies)为制定澳大利亚首个全国原住民和托雷斯海峡岛民癌症框架所开展的一项倡议,该倡议采用与利益相关者共同设计的方法。该倡议以三个核心原则为指导:取得具有政策相关性的循证成果;在各个阶段都与原住民保持接触并获得其信任;以及采用最佳实践和适当的研究方法。该框架的制定包含了四个组成部分的研究:文献综述;多方面的利益相关者咨询和投入;研究结果的三角验证;以及利益相关者直接参与框架的起草和修订。文献综述证实了癌症对原住民的负担日益加重,而利益相关者咨询则促成了有实际经验的各方的全面投入。咨询揭示了现有文献中未确定的问题,并强调了不同的优先事项,从而加强了纳入利益相关者观点的价值。本文主要侧重于记录所使用的方法;仅为了说明该过程的结果,呈现了部分研究结果。该框架已在 www.canceraustralia.gov.au 上发布;将在其他地方发表咨询结果的进一步描述和分析。大规模咨询所涉及的后勤工作相当繁重。然而,数据的质量以及与利益相关者建立持续伙伴关系和知识转化的基础,远远超过了挑战。本文所述的广泛利益相关者咨询过程为其他国家和国际原住民重点领域的优先事项制定以及政策和实践的制定提供了模型,这些措施符合那些受影响最大的人群的需求。该框架通过建立一个商定的、共享的和基于证据的议程,为各司法管辖区的癌症计划、最佳护理途径以及各级卫生系统中所有参与者的规划和服务规划提供了指导。