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Open Tools for Self-Tracking, Self Experimentation, and Patient-Provider Collaboration in Symptom Self-Management and Clinical Care

Open Tools for Self-Tracking, Self Experimentation, and Patient-Provider Collaboration in Symptom Self-Management and Clinical Care
用于症状自我管理和临床护理中的自我跟踪、自我实验以及患者与提供者协作的开放工具
批准号:
10175028
负责人:
James A Fogarty
金额:
$31.84万
依托单位:
依托单位国家:
美国
项目类别:
财政年份:
2018
资助国家:
美国
项目状态:
已结题
起止时间:
2018-09-05 至 2024-05-31

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中文摘要
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英文摘要
Project Summary / Abstract Despite strong and growing interest in self-tracking data to capture a more complete, accurate, and longer-term understanding of an individual's health (e.g., activity / symptom journals, wearable sensor data), patients and health providers struggle to gain insights from such data. Technologies often fail to deliver benefits, as people are limited by data silos, abandon tracking due its burdens, fail to track potential symptom triggers or relevant context, and reach flawed conclusions due to a lack of scientific rigor. Providers often question data, lack tools to analyze it, and feel unequipped to interpret it. When people seek assistance from providers, commercial self-tracking tools generally lack support for sharing and patient-provider collaboration in analysis and interpretation. The long-term goal is to empower patients and providers to leverage the unprecedented potential of self-tracking data in moving from population-level understanding to personalized insights in self-management and clinical care. The overall objective in this application is: (1) to develop open tools that support innovation and research in self-tracking for self-management and clinical care, and (2) to inform, develop, and evaluate these tools with patients and providers seeking personalized insights through self-tracking data in irritable bowel syndrome, chronic headaches, and juvenile idiopathic arthritis. In the five specific aims of the research: (1) Proposed open tools will support the end-to-end process of self-tracking, from collecting to managing to interpreting many types of self-tracked health data. (2) Proposed self-tracking applications and underlying tools will be informed, developed, and evaluated in participatory research with patients and providers, including focus groups, technology probes, and pilot studies with patients and providers. (3) Proposed tool support for self-experimentation will be developed, helping patients use data to move from population-level understanding (e.g., that caffeine can trigger symptoms) to individualized understanding (e.g., whether caffeine appears to cause this individual patient’s symptoms), as informed, developed, and evaluated in participatory research with patients and providers. (4) Proposed tool support for patient-provider collaboration using self-tracked health data will be developed, supporting end-to-end collaboration in planning, collecting, analyzing, and interpreting self-tracked health data, as informed, developed, and evaluated in participatory research with patients and providers. (5) Proposed design patterns and underlying open tools will support extension of these innovations to additional health contexts. The approach is innovative in extensive participatory research with patients and providers examining effective uses of self-tracked health data, in development of self-tracking designs in the contexts of irritable bowel syndrome, chronic headaches, and juvenile idiopathic arthritis, and in distilling design patterns to extend innovation into new contexts. The research is significant because of the potential for new understanding and open tools to transform the role of self-tracked health data in self-management and clinical care, within and well beyond the contexts of the current research.
期刊论文(4)
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会议论文
“They don’t always think about that”: Translational Needs in the Design of Personal Health Informatics Applications
“他们并不总是考虑这一点”:个人健康信息学应用程序设计中的转化需求
DOI: 10.1145/3411764.3445587
发表时间: 2021
期刊: Proceedings of the ACM Conference on Human Factors in Computing Systems
影响因子: --
作者: [Kirchner, Susanne, Schroeder, Jessica, Fogarty, James, Munson, Sean A.]
通讯作者: Munson, Sean A.
Evaluating a novel, portable, self-administered device ("Flicker-App") that measures critical flicker frequency as a test for minimal hepatic encephalopathy in cirrhosis
  • 批准号:
    9987155
  • 项目类别:
  • 资助金额:
    $22.35万
  • 财政年份:
    2019
  • 负责人:
    James A Fogarty
  • 依托单位:
海外基金