Saunders Carla, Crossing Sally
School of Medicine and Public Health, The University of Newcastle, Wallsend, NSW 2287, Australia.
BMC Res Notes. 2012 Dec 3;5:667. doi: 10.1186/1756-0500-5-667.
There is a growing amount of literature to support the view that active involvement in research by consumers, especially informed and networked consumers, benefits the quality and direction of research itself, the research process and, most importantly, people affected by cancer. Our exploratory project focuses on identifying their priorities and developing a process to assess the research needs of Australian cancer consumers which may be useful beyond the cancer scenario.
This project was consumer initiated, developed and implemented, with the assistance of a leading Australian cancer consumer advocacy group, Cancer Voices NSW (CVN). Such direct involvement is unusual and ensures that the priorities identified, and the process itself, are not influenced by other interests, regardless how well-intentioned they may be. The processes established, and data collection via a workshop, followed by a questionnaire to confirm and prioritise findings, and comparison with a similar UK exercise, are detailed in this paper.
Needs across five topic areas reflecting cancer control domains (prevention and risk; screening and diagnosis; treatment; survivorship; and end of life) were identified. Cancer consumers high priority research needs were found to be: earlier diagnosis of metastatic cancers; the extent of use of best practice palliative care guidelines; identifying barriers to cancer risk behaviour change; and environmental, nutrition and lifestyle risk factors for people with cancer. A process for identifying consumers' research priorities was developed and applied; this may be useful for further investigation in this under-studied area.
The findings provide a model for developing a consumer derived research agenda in Australia which can be used to inform the strategic direction of cancer research. Consumers have been seeking a workable method to achieve this and have worked in collaboration with a major cancer charity, which funds research, to do so.
越来越多的文献支持这样一种观点，即消费者积极参与研究，尤其是知识丰富且建立了人际网络的消费者，有利于提高研究本身的质量和方向、研究过程，最重要的是有利于癌症患者。我们的探索性项目专注于确定他们的优先事项，并开发一个流程来评估澳大利亚癌症患者的研究需求，这一流程可能在癌症领域之外也有用。
该项目由消费者发起、开发和实施，在澳大利亚领先的癌症患者倡导组织新南威尔士州癌症之声（CVN）的协助下进行。这种直接参与并不常见，可确保所确定的优先事项以及流程本身不受其他利益的影响，无论其意图多么良好。本文详细介绍了所建立的流程、通过研讨会进行的数据收集，随后通过问卷调查来确认并确定调查结果的优先级，以及与英国类似活动的比较。
确定了反映癌症控制领域（预防与风险；筛查与诊断；治疗；生存；以及生命末期）的五个主题领域的需求。发现癌症患者的高度优先研究需求为：转移性癌症的早期诊断；最佳实践姑息治疗指南的使用范围；确定癌症风险行为改变的障碍；以及癌症患者的环境、营养和生活方式风险因素。开发并应用了一种确定患者研究优先事项的流程；这可能有助于在这个研究不足的领域进行进一步调查。
研究结果为在澳大利亚制定由患者主导的研究议程提供了一个模型，可用于为癌症研究的战略方向提供信息。患者一直在寻求一种可行的方法来实现这一目标，并与一家资助研究的主要癌症慈善机构合作开展此项工作。
