Small Cohort of Epilepsy Patients Showed Increased Activity on Facebook before Sudden Unexpected Death

TL;DR

This study investigates whether behavioral signals from Facebook activity can serve as early warning indicators for SUDEP in epilepsy patients, revealing preliminary behavioral changes before the event.

Contribution

It introduces the novel approach of analyzing social media data for early detection signals of SUDEP, using text and sentiment analysis on patient timelines.

Findings

Increased verbosity observed before SUDEP events.

More use of functional words prior to SUDEP.

Detectable sentiment shifts in social media posts.

Abstract

Sudden Unexpected Death in Epilepsy (SUDEP) remains a leading cause of death in people with epilepsy. Despite the constant risk for patients and bereavement to family members, to date the physiological mechanisms of SUDEP remain unknown. Here we explore the potential to identify putative predictive signals of SUDEP from online digital behavioral data using text and sentiment analysis. Specifically, we analyze Facebook timelines of six epilepsy patients deceased due to SUDEP, donated by surviving family members. We find preliminary evidence for behavioral changes detectable by text and sentiment analysis tools. Namely, in the months preceding their SUDEP event patient social media timelines show: i) increase in verbosity; ii) increased use of functional words; and iii) sentiment shifts as measured by different sentiment analysis tools. Combined, these results suggest that social media engagement, as well as its sentiment, may serve as possible early-warning signals for SUDEP in people with epilepsy. While the small sample of patient timelines analyzed in this study prevents generalization, our preliminary investigation demonstrates the potential of social media data as complementary data in larger studies of SUDEP and epilepsy.