Mind the Gap! Developing Patient Responsive Information for Epilepsy

Technology must adapt to changing expectations about shifting patient needs and accessing health services. Standardised websites provide information often in the “frequently asked questions” format. There is little research about how much these answer the questions of people with epilepsy (PWE). This study used social media data to analyse the questions PWE have relating to “what would you ask a neurologist/epileptologist” and “do you have any questions relating to your epilepsy”. The study resulted in 2752 questions from PWE in Europe, North America and Australia, presented in the raw data format of natural language. Questions were themed using an unsupervised topic modelling algorithm to process and categorise the data into an aggregated question set. Many of the questions are not currently answered by Epilepsy charity and medical websites, and many centre on restrictions and fears about lifestyle. This study acts as the first stage toward the supervised topic classification: providing a list of questions to be submitted for answering by healthcare professionals required for a Virtual Assistant. The ultimate aim of the project is to generate a Virtual Assistant/Chatbot for the use of PWE to provide accurate and interactive responses to their real questions. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This study did not receive any funding ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: No ethics approval was required because all of the data used was openly available to the public before the initiation of the study. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable. Yes All data produced in the present study are available upon reasonable request to the authors.