CRII: CHS: SCH: Novel User Interfaces for Reporting Personal Health Data to Lay Individuals

CRII：向非专业人员报告个人健康数据的新型用户界面。计算机技术的进步现在为个人提供了前所未有的访问个人健康数据的方式。这些数据将传递给情绪波动的人，并可能传递具有改变生活意义的信息。对于计算系统如何能够熟练地向外行人报告这些数据，我们的理解存在重大差距。在肿瘤护理方面，该CRII项目将使电子数据报告工具的设计与专家沟通策略和非专业人员的需求保持一致。这些工具将被设计为补充，而不是取代个人与照顾者的沟通。该项目将构建一套丰富的数据集，用于在整个肿瘤护理过程中交流个人健康信息。在对收集的数据进行编码和分析后，分析结果将用于制定交互技术和图形技术的设计指南，以便在用户界面中传达个人健康数据。我们期望由此产生的工具将帮助癌症患者管理与癌症诊断、治疗和长期缓解相关的个人健康数据并采取行动。除了肿瘤学环境外，拟议研究的结果应证明对慢性疾病管理有益，特别是对那些患者参与其健康数据对取得积极健康结果至关重要的疾病。本研究的重点是收集一组丰富的定量和定性数据，以正式表征肿瘤护理中常见的临床数据类型的技术复杂性和情感敏感性。在随后的研究中，这些数据将用于确定计算模型的变量集、依赖关系和结构特征，从而有可能开发自动化方法，向终端用户传送与临床相关的健康数据。研究将在临床现场与肿瘤学家及其患者一起进行，采用人种学方法和调查相结合的方法。通过这些方法收集的数据将迭代编码和分析使用描述性，专题分析采用归纳和演绎的方法相结合。对这些数据的分析将揭示计算工具的具体设计指南，这些工具可以将个人健康数据传递给肿瘤护理人员。基于这些指南的初步设计将根据肿瘤患者、肿瘤学家和医患交流研究人员的输入进行开发和迭代完善。最终的设计将体现在一个包含交互技术和图形和语言框架技术的原型中，这些技术将展示在临床相关健康数据的呈现方面的专家能力。原型系统将选择示例数据的框架，并演示所设计的交互和表示技术。原型的试点测试将在项目早期阶段招募的一部分临床医生以及在研究地点招募的具有先前管理慢性病经验的个人中进行。

CRII: Novel User Interfaces for Reporting Personal Health Data to Lay Individuals Advances in computing technology now offer individuals unprecedented ways to access personal health data. Such data will reach people in fluctuating emotional states and might deliver information that has life-altering implications. Significant gaps exist in our understanding of how computing systems can expertly report these data to laypeople. This CRII project will align the design of electronic data reporting tools with expert communication strategies and the needs of lay individuals, in the context of oncology care. These tools will be designed to supplement, not replace, individuals' communication with their caregivers. The project will enable the construction of a rich set of data related to communicating personal health information throughout oncological care. After encoding and analyzing the data collected, results of the analysis will be used to formulate design guidelines for interaction techniques and graphical techniques to convey personal health data in a user interface. We expect that the resulting tools will aid cancer patients in managing and acting on personal health data related to cancer diagnosis, treatment and prolonged remission. In addition to the oncology setting, results of the proposed studies should prove beneficial in chronic illness management, particularly for illnesses in which patient engagement with their health data is critical in achieving positive health outcomes. This research focuses on assembling a rich set of quantitative and qualitative data to formally characterize both the technical complexity and emotional sensitivity of clinical data types common to oncology care. These data will be used to define, in subsequent research, the sets of variables, dependencies and structural features of computational models to make possible the development of automated approaches to conveying clinically-relevant health data to lay end users. Studies will be conducted in clinical field sites with oncologists and their patients, using a combination of ethnographic methods and surveys. Data collected through these methods will be iteratively coded and analyzed using descriptive, thematic analyses employing a combination of inductive and deductive approaches. Analyses of these data will uncover specific design guidelines for computing tools that convey personal health data to lay individuals in oncology care. A preliminary design based on these guidelines will be developed and iteratively refined based on input from oncology patients, oncologists, and patient-clinician communication researchers. The resulting design will be embodied in a prototype containing interaction techniques and graphical and linguistic framing techniques that demonstrate expert capability in the presentation of clinically-relevant health data. The prototype system will select framings of example data and demonstrate the interaction and presentation techniques designed. Pilot tests of the prototype will be conducted with a subset of the clinicians recruited in earlier phases of the project as well as individuals with prior experience managing chronic illness, recruited at the study site.