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.