myAURA: Personalized Web Service for Epilepsy Management

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患有慢性病的人尤其重要，例如 癫痫，因为信息丰富使人们很难理解最佳治疗方案，甚至相关性 每个私人案件的信息。定性和定量研究表明，癫痫患者和 他们的照顾者(PWEC)需要视觉上吸引人的、易于使用的在线工具来：(1)提取、分类、组织和 个性化信息和(2)提供自动、主动的建议，以支持基于证据的 关于治疗和自我管理的决定。 目前还没有为PWEC整合相关信息的在线工具。他们必须进行一次大规模的 在不同资源中进行单独搜索的次数，并手动梳理通常不相关的结果和 一系列令人困惑的医疗和自我管理选项。拟议的研究旨在直接解决这一问题 创新的数据和网络科学方法将多种资源安全地集成到 MyAURA，一种个性化的、易于使用的Web服务。新的贡献包括大规模的计算 癫痫知识图与去除冗余信息的网络推理方法相结合， 用于识别、可视化、推荐和个性化相关信息。的跨学科团队 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方面的专家 自我管理将与患者、护理人员及其倡导者合作，根据 他们的需求。此外，利益相关者，如美国癫痫基金会，已经授予了一项独家 使用协议从他们的网站、讨论组和社交媒体上获取PWEC数据。 MyAura将把实用的、特定地点和患者特定的医疗保健信息与有针对性的科学信息相结合 文献、生物医学数据库、社交媒体和与癫痫相关的网站，其中包含专家的信息， 临床试验、药物、社区资源和聊天室。它将建立在创新的数据和网络科学基础上 研究目的中所追求的方法。目标1：通过整合以下资源生成癫痫知识图谱 社交媒体、电子健康记录、患者讨论板、科学文献等大规模数据 数据库、宣传网站和移动应用程序数据；目标2：开发推荐和可视化 基于知识图主干自动提取的算法，其中很可能包含 与特定用户兴趣相关的信息，这些兴趣来自电子健康记录、网络搜索、社交 癫痫网站上的媒体和活动。目标3：以用户为中心的myAURA开发和中试测试 用户研究，以验证它是否以及如何提高患者的活跃度。 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 响应患者需求的健康图书馆。为了建立一个通用的框架，我们将记录和分享我们的 管道服务于患有其他慢性病的患者或普通用户，以跟踪广泛的健康兴趣。

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.