Quantifying User Engagement with the Helpilepsy Seizure Diary

Seizure diaries are a key tool in epilepsy management, but patient engagement is often sporadic, affecting data completeness and reliability. To address this, the authors developed a multidimensional engagement metric combining app usage features common in business analytics with clinically relevant variables, applied to data from the Helpilepsy seizure diary application. Clustering analysis revealed three distinct user groups: low, medium, and highly engaged users. Profiling the highly engaged group showed they tend to be older at diagnosis, have had epilepsy for a longer duration, and have tried more medications, including higher doses of common anti-seizure drugs and medications typically used for refractory epilepsy. These findings suggest that e-diary design should prioritize onboarding and support for patients newly diagnosed with epilepsy, and that engagement should be measured not only by seizure uploads but also by completion of other diary features.