Self-tracking in endometriosis: Evolving expectations around a gynecological app developed by a Finnish patient organization

Abstract

The article examines the possibilities and limits of patient advocacy-led health technology design through a case study: a non-commercial mobile self-tracking app developed by a Finnish patient organization to advance medical care and research in endometriosis, an underfunded and understudied gynecological condition. Drawing on interviews with patient organization representatives, specialized clinicians and people with endometriosis, as well as written endometriosis stories, this article traces the evolving expectations around the app to understand the landscape of hopes and concerns in which patient advocacy-led design is conceived and received. This article identifies tensions in visions about how the app could be used as well as locates shifts in expectations as the app moved from an idea to everyday use. The article also shows how structural aspects of established technological systems, such as digital health infrastructures or data ownership relations, shape expectations about future uses of patient advocacy-led technology. This case study contributes to science and technology studies scholarship on self-tracking and health technology development by providing a nuanced understanding of how the dynamics of expectation in patient advocacy-led design operate in a complex and underdiagnosed gendered chronic illness.