Quantifying User Engagement with the Helpilepsy Seizure Diary

Seizure diaries are one of the most useful sources of information in the management of epilepsy, however patient engagement with them can be sporadic. Sustained participation with seizure diaries affects the completeness and reliability of self-reported data, so it is vital to be able to measure engagement. To facilitate this, we create a multidimensional engagement metric with which to characterize how patients interact with their seizure diary. We utilise data from the Helpilepsy, a seizure diary application, common features found in application engagement metrics in business settings, and well understood clinical features to do this. Clustering is then performed to isolate different user groups based on how engaged they are, and these groups are studied to understand what drives the differences in engagement. We found three groups emerge from the clustering: low, medium and highly engaged users. Investigating these groups further, we put together a ``profile" for highly-engaged users. We find that they tend to be older at the point of diagnosis, and have had epilepsy for longer than the other users. We also find they tend to have had more medications, have higher doses of common anti-seizure medications, and they have more medications typically given to those with refractory epilepsy. The implications for e-diary design are that more attention should be given to those newer to epilepsy in the onboarding phase. Also, engagement is not necessarily based on just the upload of seizures, with other features of an e-diary being important to be filled in.