CAREER: Adaptive, Collaborative User Interfaces for Chronically Ill Adolescents' Personal Data Management

职业：针对慢性病青少年个人数据管理的自适应协作用户界面

• 批准号: 1652302
• 负责人: Lauren Wilcox
• 金额: $ 55.3万
• 依托单位: Georgia Tech Research Corporation
• 依托单位国家: 美国
• 项目类别: Continuing Grant
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-03-01 至 2021-12-31
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=1652302&HistoricalAwards=false
• 关键词: CAREER; Adaptive; Collaborative; User; Interfaces

This project is about developing collaborative technologies for tracking personal information, in the context of helping teenagers with chronic health conditions track data to manage their illnesses. Increasingly, data such as sleep duration and physical activity can be inferred through fitness trackers and smartphone sensors, but personal experiences such as symptom tracking, pain, and sleep quality still need to be tracked manually. This is effortful, especially for teenagers with immature self-care abilities. Thus, one key aim of the project is to design collaborative strategies for collecting self-report data that vary the timing, method, and person used to collect the data to maximize the quality and consistency of data collected for particular teens, given their condition, self-care abilities, and family situation. A second key aim is to align this self-report data with data sensed by smartphones and fitness trackers, developing algorithms and visual displays that help teens and families review the data together and make good decisions about the teens' condition. For both data collection and review, the tools developed will need to be sensitive to problems such as differences in parents' and teens' views of the condition and teens' needs to become independent and establish personal identity. To do this, the research team will work very closely with families with chronically-ill teens, doing field studies of how families currently manage this sort of tracking, interviews with teens and parents both together and separately, and short-term studies with prototype tools as they build and improve them. The project will end with a long-term evaluation of the tools to see how they affect teens' attitudes and abilities related to self-care, as well as how they work with their families and doctors. The work will inform the lead investigator's courses on human-computer interaction and personal health informatics, and support the development of summer camp outreach activities to K-12 students, using health informatics to increase their interest in STEM research.The research work will proceed in three main phases, working closely with adolescent patients and doctors at multiple medical centers in the Atlanta area. The first phase involves formative work around the first aim of eliciting personal health care information and defining requirements for mobile sensing applications that embody collaborative data collection, presentation, and management techniques. This will involve interview studies with teens, parents, and caregivers, to elicit their attitudes toward and perceptions of collaborative personal health management technologies. It will also utilize pilot deployments of strategies for collecting data through ecological momentary assessments and experience sampling, with frequency and timing guided in part by automatically-sensed data. The second phase aims at building a fully functional prototype system, with three main components: (1) implementation of data collection strategies proven effective in the first phase; (2) development of augmented data fusion techniques that triangulate self-reported with sensed data; and (3) creation of both algorithms for analyzing the fused data and visualizations that support these analyses. This prototype will then drive the third phase, an 18-month study with 60 families in three groups: one that will use the full prototype, one a version that replaces the collaborative elicitation strategies with an existing, standard sampling strategy, and one as a control group. The analysis will examine how the system affects both adolescents' and parents' privacy concerns, acceptance of both self-reported and sensed mobile data collection in general and with this tool in particular, the effort required to use the tool, and adolescents' self-efficacy and health locus of control. The evaluation will utilize both standard survey instruments for quantitative measures and interviews with adolescents as they use the tools over time.

该项目是关于开发用于跟踪个人信息的协作技术，以帮助患有慢性健康状况的青少年跟踪数据来管理他们的疾病。 越来越多的数据，如睡眠时间和身体活动，可以通过健身追踪器和智能手机传感器推断，但个人经验，如症状跟踪，疼痛和睡眠质量仍然需要手动跟踪。 这是很费力的，尤其是对于自我照顾能力不成熟的青少年来说。 因此，该项目的一个关键目标是设计合作策略，收集自我报告的数据，改变时间，方法和用于收集数据的人，以最大限度地提高特定青少年收集的数据的质量和一致性，考虑到他们的状况，自我照顾能力和家庭情况。 第二个关键目标是将这些自我报告数据与智能手机和健身追踪器感知到的数据相结合，开发算法和视觉显示，帮助青少年和家庭一起审查数据，并对青少年的状况做出正确的决定。 对于数据收集和审查，开发的工具需要对父母和青少年对这种情况的看法不同以及青少年需要独立和建立个人身份等问题敏感。 为了做到这一点，研究团队将与患有慢性病的青少年的家庭密切合作，对家庭目前如何管理这种跟踪进行实地研究，与青少年和父母一起和单独进行访谈，并在他们建立和改进原型工具时进行短期研究。 该项目将以对这些工具的长期评估结束，以了解它们如何影响青少年与自我护理有关的态度和能力，以及他们如何与家人和医生合作。 这项工作将为首席研究员的人机交互和个人健康信息学课程提供信息，并支持开发面向K-12学生的夏令营推广活动，利用健康信息学提高他们对STEM研究的兴趣。研究工作将分三个主要阶段进行，与亚特兰大地区多个医疗中心的青少年患者和医生密切合作。 第一阶段涉及围绕引出个人医疗保健信息和定义体现协作数据收集、呈现和管理技术的移动的传感应用的要求的第一目标的形成性工作。 这将涉及与青少年，父母和照顾者的访谈研究，以了解他们对协作个人健康管理技术的态度和看法。它还将通过生态瞬时评估和经验采样，利用试点部署收集数据的战略，其频率和时间部分由自动感知数据指导。 第二阶段的目标是建立一个功能齐全的原型系统，有三个主要组成部分：（1）实施在第一阶段证明有效的数据收集策略;（2）开发增强数据融合技术，对自我报告与感知数据进行三角测量;（3）创建用于分析融合数据的算法和支持这些分析的可视化。 然后，这个原型将推动第三阶段，一个为期18个月的研究，60个家庭分为三组：一个将使用完整的原型，一个版本，取代现有的，标准的抽样策略的合作启发策略，一个作为对照组。 该分析将研究该系统如何影响青少年和父母的隐私问题，接受自我报告和感觉移动的数据收集一般，特别是与此工具，使用该工具所需的努力，以及青少年的自我效能和健康控制点。评价将利用标准调查工具进行定量测量，并在青少年长期使用这些工具时与他们进行访谈。

项目成果

Design in the HCI Classroom: Setting a Research Agenda

人机交互课堂设计：设定研究议程

• DOI: 10.1145/3322276.3322381
• 发表时间: 2019
• 期刊: Proceedings of the 2019 ACM Conference on Designing Interactive Systems
• 作者: Wilcox, Lauren;DiSalvo, Betsy;Henneman, Dick;Wang, Qiaosi
• 通讯作者: Wang, Qiaosi

Just-in-Time Design: In Situ Methods for Capturing and Articulating Adolescents’ Illness Experiences

及时设计：捕捉和表达青少年疾病经历的现场方法

• 发表时间: 2017
• 期刊: Proc. 7th WISH 2017 at the American Medical Informatics Association (AMIA
• 作者: Hong, Matthew;Lakshmi, Udaya;Wilcox, Lauren
• 通讯作者: Wilcox, Lauren

The need for guidance and consistency in adolescent privacy policies: a survey of CMIOs.

青少年隐私政策的指导和一致性的必要性：CMIO 的调查。

• 发表时间: 2018
• 期刊: AMIA ... Annual Symposium proceedings. AMIA Symposium
• 作者: Wilcox,Lauren;Sharko,Marianne;Hong,Matthew;Hollberg,Julie;Ancker,JessicaS
• 通讯作者: Ancker,JessicaS

Visual ODLs: Co-Designing Patient-Generated Observations of Daily Living to Support Data-Driven Conversations in Pediatric Care.

视觉 ODL：共同设计患者生成的日常生活观察，以支持儿科护理中数据驱动的对话。

• 发表时间: 2018
• 期刊: ACM conference on human factors in computing systems
• 作者: Hong, Matthew K.;Lakshmi, Udaya;Olson, Thomas O;Wilcox, Lauren
• 通讯作者: Wilcox, Lauren

Integrating Patient-Generated Observations of Daily Living into Pediatric Cancer Care: A Formative User Interface Design Study

将患者日常生活观察纳入儿科癌症护理：一项形成性用户界面设计研究

• DOI: 10.1109/ichi.2018.00037
• 发表时间: 2018
• 期刊: 2018 IEEE International Conference on Healthcare Informatics
• 作者: Lakshmi, Udaya;Hong, Matthew;Wilcox, Lauren
• 通讯作者: Wilcox, Lauren