The impact of new media on people with epilepsy

This project will study a group of patients with epilepsy, a chronic condition with profound social and biographical implications, and their use of social media and the digital environment more broadly. Subjects will be recruited from members of the British organisation Epilepsy Action. The project aims to explore how these patients engage with social media to present themselves, interact with others who share the experience of epilepsy, and shape their sense of self. The study draws on research and methods from various disciplines, including medicine, the medical humanities, literary studies, socio-linguistics, the digital humanities, surveillance studies and human-computer interaction (HCI); a combination of qualitative interviewing and close reading form the basic methodological approaches. It is hoped that such a study will be of benefit to medical practitioners and software designers seeking to improve the existing information and resources (and develop future offerings) available to patients. As a second objective, the project aims to update research on how epilepsy is understood culturally in the digital age. More widely, it is anticipated that the research will offer a valuable case study for broader explorations into representations and experiences of the body, consciousness and subjectivity in a culture increasingly dominated by social media and digital technologies.