Social media helps understand sudden death in epilepsy

In a paper in the journal Epilepsy & Behavior, in a collaboration with Ian Wood, Rion Correia and Wendy Miller sponsored by the National Institutes of Health, National Library of Medicine, we demonstrate that social media, in this case Facebook, could be used to detect behaviors preceding Sudden Unexpected Death in Epilepsy (SUDEP), the leading cause of death in people with uncontrolled epileptic seizures. This interdisciplinary work involving informatics/complex systems researchers, clinical/behavioral epilepsy scientists, and supported by the Epilepsy Foundation of America, brought to light findings that are highly relevant for people living with this chronic condition. The team is currently working on a personalized web service for epilepsy, myAura, which will include diverse clinical and non-clinical data, namely self-reported patient entries regarding seizures, medication adherence, and physician encounters. This easy-to-use web service will also include the option for users to donate their social media timelines, making this data more easily accessible for larger studies.

You can read the article following the links in reference:

I.B. Wood, R.B. Correia, W.R. Miller, and L.M. Rocha [2022]. “Small Cohort of Epilepsy Patients Showed Increased Activity on Facebook before Sudden Unexpected Death”. Epilepsy & Behavior. 128: 108580. DOI:10.1016/j.yebeh.2022.108580. Preprint: arXiv:2201.07552.