JMIR Publications

ABSTRACT

Background:

Epilepsy is a chronic neurological condition characterized by recurrent, unprovoked seizures. Epilepsy management often involves a ‘seizure diary’—a patient–generated record of seizure events and accompanying information to inform clinical decisions. However, seizure diaries face accuracy concerns from clinicians and deteriorating engagement over time. Digital Patient–Generated Health Data (PGHD) holds potential to reduce accuracy concerns and increase engagement. As such, PGHD is an area of interest within epilepsy, as smartwatches and mobile apps are increasingly adopted as self–management tools.

Objective:

This study examines the views of people with epilepsy, carers and epilepsy clinicians on a PGHD clinical dashboard within NHS epilepsy clinical pathways. This study explores the opportunities, challenges and preliminary user–requirements for a PGHD clinical dashboard (phase 1). Subsequently, it prioritises those user–requirements from a patient and clinician perspective through a survey (phase 2).

Methods:

A two-phase mixed method approach was used. In Phase 1, six focus groups were held over seven months, from April to October 2025, with 11 people with epilepsy, 2 carers and 9 epilepsy clinicians to explore the opportunities and challenges of presenting PGHD in a clinical dashboard for epilepsy care. The focus groups underwent inductive and deductive thematic analysis; references to specific or potential uses of PGHD were deductively extracted. In Phase 2, a survey was developed using the Kano methodology to classify and prioritise the proposed features according to end–user satisfaction. 11 clinicians, 14 people with epilepsy and 2 carers completed the survey.

Results:

Participants described the burden of seizure tracking and discussed methods to improve its value, such as predictive and actionable analytics and efficient data communication. People with epilepsy saw potential for PGHD to support autonomous experimentation within self-management whereas clinicians saw it as an opportunity to improve oversight. The focus groups identified 22 features for a clinical dashboard for epilepsy that incorporates holistic and epilepsy–specific PGHD, 19 of which were novel within epilepsy care and beyond the communication of fundamental clinical information. The quantitative survey demonstrated broad alignment between user groups but a surprising disinterest in explainable AI amongst clinicians. The most prioritised features were (i) patient–specific pre– to post–ictal seizure type descriptions and (ii) open identification of AI–generated information.

Conclusions:

A PGHD clinical dashboard has potential to provide rich, out–of–clinic information to epilepsy clinicians in a standardised format that alleviates time burden. Yet it also can provide a foundation for people with epilepsy, and carers, to exercise self–advocacy and have their holistic needs met. Whilst this study demonstrated alignment between the user groups, the specific needs of each must be balanced to encourage continued data generation by people with epilepsy/carers and use by clinicians in time–poor health care settings. Clinical Trial: N/A