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首页> 外文期刊>Journal of medical Internet research >Visualizing an Ethics Framework: A Method to Create Interactive Knowledge Visualizations From Health Policy Documents
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Visualizing an Ethics Framework: A Method to Create Interactive Knowledge Visualizations From Health Policy Documents

机译：可视化道德框架：一种从健康策略文件创建交互式知识可视化的方法

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Background Data have become an essential factor in driving health research and are key to the development of personalized and precision medicine. Primary and secondary use of personal data holds significant potential for research; however, it also introduces a new set of challenges around consent processes, privacy, and data sharing. Research institutions have issued ethical guidelines to address challenges and ensure responsible data processing and data sharing. However, ethical guidelines directed at researchers and medical professionals are often complex; require readers who are familiar with specific terminology; and can be hard to understand for people without sufficient background knowledge in legislation, research, and data processing practices. Objective This study aimed to visually represent an ethics framework to make its content more accessible to its stakeholders. More generally, we wanted to explore the potential of visualizing policy documents to combat and prevent research misconduct by improving the capacity of actors in health research to handle data responsibly. Methods We used a mixed methods approach based on knowledge visualization with 3 sequential steps: qualitative content analysis (open and axial coding, among others); visualizing the knowledge structure, which resulted from the previous step; and adding interactive functionality to access information using rapid prototyping. Results Through our iterative methodology, we developed a tool that allows users to explore an ethics framework for data sharing through an interactive visualization. Our results represent an approach that can make policy documents easier to understand and, therefore, more applicable in practice. Conclusions Meaningful communication and understanding each other remain a challenge in various areas of health care and medicine. We contribute to advancing communication practices through the introduction of knowledge visualization to bioethics to offer a novel way to tackle this relevant issue.
机译：背景数据已成为驾驶健康研究的基本因素，并且是个性化和精密药物发展的关键。个人数据的主要和次要使用具有重要的研究潜力;但是，它还介绍了关于同意过程，隐私和数据共享的新挑战。研究机构已发出道德准则，以解决挑战并确保负责任的数据处理和数据共享。但是，针对研究人员和医疗专业人员的道德指南往往是复杂的;要求熟悉特定术语的读者;在立法，研究和数据处理实践中没有足够的背景知识，可能很难理解人员。目的这项研究旨在目视代表道德框架，使其利益相关者更易获得其内容。更一般地说，我们希望通过提高负责任地处理数据的行为者的能力来探讨可视化政策文件的潜力，以防止研究不当行为。方法采用基于知识可视化的混合方法方法，3个顺序步骤：定性内容分析（开放和轴向编码等）;可视化了从上一步引起的知识结构;并添加交互式功能以使用快速原型设计访问信息。结果通过我们的迭代方法，我们开发了一种工具，允许用户通过交互式可视化探索数据共享的道德框架。我们的结果代表了一种方法，可以使政策文件更易于理解，因此更适用于实践。结论彼此有意义的沟通和理解仍然是医疗保健和医学领域的挑战。我们通过将知识可视化引入生物伦理的知识可视化来提供推进沟通措施，以提供一种解决此相关问题的新方法。

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