myAURA: Personalized Web Service for Epilepsy Management

myAURA：用于癫痫管理的个性化 Web 服务

• 批准号: 10414826
• 负责人: KATY BORNER
• 金额: $ 29.93万
• 依托单位: STATE UNIVERSITY OF NY,BINGHAMTON
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-06-01 至 2023-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10414826
• 关键词: Achievement; Address; Advocacy; Advocate; Affect; Agreement; Algorithms; American; Americas; Anxiety; Big Data; Caregivers; Caring; Case Study; Chronic; Chronic Disease; Clinical; Clinical Data; Clinical Pharmacology; Clinical Trials; Collaborations; Comb animal structure; Communities; Data; Databases; Decision Making; Development; Dictionary; Diet; Drug Interactions; Electronic Health Record; Epilepsy; Evaluation; Face; Facebook; Feedback; Feeds; Focus Groups; Foundations; General Practitioners; Goals; Grant; Health; Healthcare; Individual; Informatics; Information Retrieval; Internet; Knowledge; Libraries; Life Style; Literature; Location; Manuals; Maps; Measurement; Medical; Medical Research; Mental Depression; Methodology; Methods; Mining; Neurologist; Outcome; Patients; Persons; Pharmaceutical Preparations; Pharmacology; Play; Pre-Post Tests; Production; PubMed; Quality of life; Recommendation; Research; Research Personnel; Resources; Risk; Role; Science; Secure; Seizures; Self Management; Series; Services; Social isolation; Source; Specialist; Suggestion; Surveys; Symptoms; System; Terminology; Testing; Text; Time; Twitter; Uncertainty; Update; Vertebral column; Visualization; Work; base; biomedical informatics; chronic neurologic disease; data infrastructure; data resource; design; diaries; epidemiologic data; evidence base; evidence based guidelines; federated computing; improved; individual patient; innovation; interest; knowledge graph; large scale data; mobile application; news; novel; online resource; recruit; side effect; skills; social media; social stigma; tool; user-friendly; web services; web site

Project Summary - myAURA: Personalized Web Service for Epilepsy Management The development of personal health libraries is particularly important for those with chronic conditions such as epilepsy, since information abundance makes it difficult to understand best treatment options or even relevance of information to each personal case. Qualitative and quantitative studies show that persons with epilepsy and their caregivers (PWEC) need visually engaging, easy-to-use, online tools to: (1) extract, classify, organize and personalize information and (2) provide automated, proactive recommendations in support of evidence-based decisions about treatment and self-management. There are currently no online tools that integrate relevant information for PWEC. They must conduct a large number of separate searches in different resources and manually comb through often irrelevant results and a confusing array of medical and self-management options. The proposed research aims to directly address this problem with innovative data- and network-science methods to securely integrate multiple resources into myAURA, a personalized, easy-to-use web service. Novel contributions include computation of a large-scale epilepsy knowledge graph together with a network inference method to remove redundant information, which are used to identify, visualize, recommend and personalize relevant information. The interdisciplinary team of experts in biomedical informatics, text and social media mining, visualization, user interface design, and epilepsy self-management will collaborate with patients, caregivers, and their advocates to design the tool according to their needs. Furthermore, stakeholders such as the Epilepsy Foundation of America, have granted an exclusive use agreement to obtain PWEC data from their website, discussion groups, and social media presence. MyAura will integrate practical, location- and patient-specific health-care information with targeted scientific literature, biomedical databases, social media, and epilepsy-related websites with information about specialists, clinical trials, drugs, community resources, and chat rooms. It will build on innovative data and network science methods pursued in the research aims. Aim 1: Produce an epilepsy knowledge graph by integrating sources of large-scale data such as social media, electronic health records, patient discussion boards, scientific literature databases, advocacy websites, and mobile app data; Aim 2: develop recommendation and visualization algorithms based on the automatic extraction of backbones of the knowledge graph, which are likely to contain information that is relevant to specific user interests derived from electronic health records, web searches, social media and activity on epilepsy.com. Aim 3: User-centered development and pilot testing of myAURA with end- user studies, to validate if and how it improves patient activation. The established partnership with epilepsy stakeholders is an excellent opportunity to build a pilot personalized health library that responds to patient needs. Toward a generalized framework, we will document and share our pipeline to serve patients with other chronic conditions or general users to track broad health interests.

项目摘要-Myaura：用于癫痫管理的个性化Web服务 个人健康图书馆的发展对于患有慢性疾病的人，例如 癫痫病，因为信息丰度使得很难理解最佳治疗选择甚至相关性 每个个人案件的信息。定性和定量研究表明，患有癫痫和的人 他们的护理人员（PWEC）需要视觉吸引人，易于使用的在线工具：（1）提取，分类，组织和 个性化信息，（2）提供自动，主动的建议，以支持循证 关于治疗和自我管理的决定。 当前没有在线工具可以整合PWEC的相关信息。他们必须进行大型 不同资源中的单独搜索数量，并通过经常无关的结果手动梳理和 混淆了各种医疗和自我管理选项。拟议的研究旨在直接解决这个问题 创新数据和网络科学方法的问题，将多个资源安全地集成到 Myaura，一种个性化的，易于使用的Web服务。新颖的贡献包括大规模计算 癫痫知识图与网络推理方法一起删除冗余信息，其中 用于识别，可视化，推荐和个性化相关信息。跨学科团队 生物医学信息学，文本和社交媒体挖掘，可视化，用户界面设计和癫痫的专家 自我管理将与患者，看护人及其倡导者合作，以根据 他们的需求。此外，美国癫痫基金会等利益相关者已获得独家 使用协议从其网站，讨论小组和社交媒体存在中获取PWEC数据。 迈拉拉将将实用，位置和特定于患者的医疗保健信息与有针对性的科学整合在一起 文献，生物医学数据库，社交媒体和与癫痫相关的网站以及有关专家的信息， 临床试验，毒品，社区资源和聊天室。它将以创新数据和网络科学为基础 研究目的所追求的方法。目标1：通过整合来源来产生癫痫知识图 大规模数据，例如社交媒体，电子健康记录，患者讨论板，科学文献 数据库，倡导网站和移动应用程序数据；目标2：开发建议和可视化 基于知识图的骨干的自动提取算法，这些算法可能包含 与从电子健康记录，网络搜索，社交中获得的特定用户兴趣相关的信息 epilepsy.com上的媒体和活动。 AIM 3：以用户为中心的开发和试点测试 用户研究，以验证其是否以及如何改善患者的激活。 与癫痫利益相关者建立的合作伙伴关系是建立个性化飞行员的绝佳机会 满足患者需求的健康库。走向广义框架，我们将记录并分享我们的 为患有其他慢性疾病或普通用户的患者提供服务的管道，以跟踪广泛的健康兴趣。

项目成果

Evaluation of emergency department-based seizure and epilepsy education: Exploring the need for early epilepsy self-management intervention.

• DOI: 10.1016/j.yebeh.2020.107702
• 发表时间: 2021-03
• 期刊: Epilepsy & behavior : E&B
• 作者: Miller WR;Wion RK;Eads P
• 通讯作者: Eads P

Contact networks have small metric backbones that maintain community structure and are primary transmission subgraphs.

• DOI: 10.1371/journal.pcbi.1010854
• 发表时间: 2023-03
• 期刊: PLoS computational biology
• 影响因子: 4.3

Small cohort of patients with epilepsy showed increased activity on Facebook before sudden unexpected death.

• DOI: 10.1016/j.yebeh.2022.108580
• 发表时间: 2022-03
• 期刊: EPILEPSY & BEHAVIOR
• 影响因子: 2.6
• 作者: Wood, Ian B.;Correia, Rion Brattig;Miller, Wendy R.;Rocha, Luis M.
• 通讯作者: Rocha, Luis M.

Just In Time: Challenges and Opportunities of First Aid Care Information Sharing for Supporting Epileptic Seizure Response

及时：急救护理信息共享支持癫痫发作应对的挑战和机遇

• DOI: 10.1145/3449187
• 发表时间: 2021
• 期刊: Proceedings of the ACM on Human-Computer Interaction
• 作者: Min, Aehong;Miller, Wendy;Rocha, Luis;Börner, Katy;Brattig Correia, Rion;Shih, Patrick C.
• 通讯作者: Shih, Patrick C.

Influence maximization in Boolean networks.

• DOI: 10.1038/s41467-022-31066-0
• 发表时间: 2022-06-16
• 期刊: Nature communications
• 影响因子: 16.6