OBJECTIVES: Report the development of the patient-centered myAURA application and suite of methods designed to aid epilepsy patients, caregivers, and clinicians in making decisions about self-management and care. MATERIALS AND METHODS: myAURA rests on an unprecedented collection of epilepsy-relevant heterogeneous data resources, such as biomedical databases, social media, and electronic health records (EHRs). We use a patient-centered biomedical dictionary to link the collected data in a multilayer knowledge graph (KG) computed with a generalizable, open-source methodology. RESULTS: Our approach is based on a novel network sparsification method that uses the metric backbone of weighted graphs to discover important edges for inference, recommendation, and visualization. We demonstrate by studying drug-drug interaction from EHRs, extracting epilepsy-focused digital cohorts from social media, and generating a multilayer KG visualization. We also present our patient-centered design and pilot-testing of myAURA, including its user interface. DISCUSSION: The ability to search and explore myAURA's heterogeneous data sources in a single, sparsified, multilayer KG is highly useful for a range of epilepsy studies and stakeholder support. CONCLUSION: Our stakeholder-driven, scalable approach to integrating traditional and nontraditional data sources enables both clinical discovery and data-powered patient self-management in epilepsy and can be generalized to other chronic conditions.

Epilepsy, a prevalent chronic neurological disorder, presents numerous challenges for people with epilepsy (PWEs) and their caregivers. They experience difficulties in receiving proper care and support due to stigma and misconceptions. Promoting public awareness in early education would be critical to reduce the stigma and to properly support them. We conducted 145 surveys and 21 interviews with teachers, school nurses, and parents of elementary and middle school students. While the participants exhibited slightly positive attitudes towards PWEs, we identified obstacles that hinder learning about epilepsy and seizure first aid: inadequate education and limited information sharing among school stakeholders. Moreover, there is a pressing need for age-appropriate education that considers the students' ages and perceptual levels. Considering the current limitations and needs, we propose potential implications for future information and communication technologies (ICTs) designs, including knowledge-sharing systems and an educational game aimed at enhancing epilepsy awareness and fostering collaborative care in elementary and middle school environments.

Epilepsy is a common chronic neurological disease. People with epilepsy (PWE) and their caregivers face several challenges related to their epilepsy management, including quality of care, care coordination, side effects, and stigma management. The sociotechnical issues of the information management contexts and challenges for epilepsy care may be mitigated through effective information management. We conducted 4 focus groups with 5 PWE and 7 caregivers to explore how they manage epilepsy-related information and the challenges they encountered. Primary issues include challenges of finding the right information, complexities of tracking and monitoring data, and limited information sharing. We provide a framework that encompasses three attributes - individual epilepsy symptoms and health conditions, information complexity, and circumstantial constraints. We suggest future design implications to mitigate these challenges and improve epilepsy information management and care coordination.

There are over three million people living with epilepsy in the U.S. People with epilepsy experience multiple daily challenges such as seizures, social isolation, social stigma, experience of physical and emotional symptoms, medication side effects, cognitive and memory deficits, care coordination difficulties, and risks of sudden unexpected death. In this work, we report findings collected from 3 focus groups of 11 people with epilepsy and caregivers and 10 follow-up questionnaires. We found that these participants feel that most people do not know how to deal with seizures. To improve others' abilities to respond safely and appropriately to someone having seizures, people with epilepsy and caregivers would like to share and educate the public about their epilepsy conditions, reduce common misconceptions about seizures and prevent associated stigma, and get first aid help from the public when needed. Considering social stigma, we propose design implications of future technologies for effective delivery of appropriate first aid care information to bystanders around individuals with epilepsy when they experience a seizure.