Online information as a decision making aid for cancer patients: recommendations from the Eurocancercoms project.
Online information as a decision making aid for cancer patients: recommendations from the Eurocancercoms project.
复制标题
在线信息作为癌症患者决策辅助：欧洲癌症通讯项目的建议。
DOI：
10.1016/j.ejca.2011.08.018
复制
发表时间：
2012
影响因子：
8.4
通讯作者：
R. Sullivan
中科院分区：
文献类型：
--
作者：
C. Maddock;S. Camporesi;I. Lewis;K. Ahmad;R. Sullivan
2010年9月至2011年3月期间，在FP7欧洲癌症通讯项目的主持下进行了一项泛欧调查。它旨在扩大公共政策对患者在寻求在线癌症信息时的特定需求的理解，并旨在确定整个欧洲在线癌症信息提供的差距。在本文中，我们描述了Tenovus调查的方法和主要发现，并就使用在线信息作为癌症患者及其家属的决策辅助提出了一些建议，即：(1)在线信息来源的透明度和问责制；(2)由不同认可形式的权威机构和专门知识（即由保健专业人员和属于患者倡导团体的患者/公众成员）对信息进行认证；(3)信息扩展：我们设想了一个三层系统，使患者能够访问从摘要到详细的不同复杂程度和信息量的信息；(4)嵌入自定义搜索工具和交互式搜索技术，允许用户根据自己的需要定义需求，并以上下文为导向；(5)跨学科交流，患者和医生的在线社区之间很少或根本没有联系。这些建议被用于建立在线平台EcancerHub，也是在欧洲癌症协会项目的支持下，该项目通过将不同的癌症社区聚集在一起，寻求打破传统的信息界限，并通过互动产生多余的知识，可以帮助患者在困难的决策时期。
A pan-European survey was conducted under the auspices of the FP7 Eurocancercoms project during the period September 2010–March 2011. It was designed to broaden public policy understanding of patients’ specific needs when seeking online cancer information and aimed to identify gaps in the online cancer information provision across Europe. In this paper we describe the methodology and main findings of the Tenovus survey, and draw some recommendations on the use of online information as a decision making aid for cancer patients and their families, namely: (1) transparency and accountability of the sources of information presented online; (2) accreditation of information by different recognised forms of authority and expertise, i.e. both by health-care professional and by patients/public members belonging to patient advocacy groups; (3) scaling up of information: we envisage a 3-tiered system that would enable patients to access different levels of complexity and volume of information from summary to detailed; (4) embedding of custom search tools and interactive search technologies to allow users to define requirements tailored on their needs and be context-driven; (5) communication across discipline boundaries, as patients’ and doctors’ online communities have very little or no contact among one another. These recommendations were applied for building the online platform EcancerHub, also under the auspices of the Eurocancercoms project, which by bringing together the different cancer communities seeks to break down traditional information boundaries, and through the interactions produce a surplus knowledge that could aid patients in difficult decision making times.