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

中环填海第二期：用于向普通人报告个人健康数据的新颖用户界面计算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。这些数据将到达情绪波动的人，并可能提供具有改变生活影响的信息。我们对计算系统如何专业地向外行报告这些数据的理解存在重大差距。该CRII项目将使电子数据报告工具的设计与肿瘤护理背景下的专家沟通策略和非专业人员的需求保持一致。这些工具旨在补充而不是取代个人与其照顾者的沟通。该项目将能够构建一组丰富的数据，用于在整个肿瘤护理过程中传达个人健康信息。在对收集到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，以在用户界面中传达个人健康数据。我们希望由此产生的工具将帮助癌症患者管理和处理与癌症诊断，治疗和长期缓解相关的个人健康数据。除了肿瘤学背景外，拟议研究的结果应证明对慢性病管理有益，特别是对于患者参与其健康数据对实现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常见的临床数据类型的技术复杂性和情感敏感性。这些数据将用于在后续研究中定义计算模型的变量集、依赖关系和结构特征，以便开发自动化方法，将临床相关的健康数据传达给非专业最终用户。研究将在临床现场与肿瘤学家及其患者一起进行，使用人种学方法和调查相结合。通过这些方法收集的数据将反复编码，并采用归纳和演绎方法相结合的描述性专题分析进行分析。对这些数据的分析将揭示计算工具的具体设计指南，这些工具将个人健康数据传达给肿瘤护理领域的普通人。基于这些指南的初步设计将根据肿瘤患者，肿瘤学家和患者-临床医生沟通研究人员的输入进行开发和迭代改进。由此产生的设计将体现在一个原型，包含互动技术和图形和语言框架技术，展示专家能力，在临床相关的健康数据的介绍。原型系统将选择框架的例子数据，并展示设计的交互和表示技术。原型的试点测试将与在项目早期阶段招募的临床医生子集以及在研究中心招募的具有既往慢性病管理经验的个人进行。

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.