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

Area of Science:

• Health Technology Design
• Patient Advocacy
• Medical Research

Background:

• Endometriosis is an underfunded and understudied gynecological condition.
• Patient advocacy organizations play a crucial role in advancing medical care and research for chronic illnesses.

Purpose of the Study:

• To examine the possibilities and limits of patient advocacy-led health technology design.
• To understand the evolving expectations and concerns surrounding patient-led health technology development.

Main Methods:

• A case study of a non-commercial mobile self-tracking app developed by a Finnish patient organization.
• Interviews with patient organization representatives, specialized clinicians, and individuals with endometriosis.
• Analysis of written endometriosis stories to trace evolving expectations.

Main Results:

• Identified tensions in how the app could be used and shifts in expectations from conception to everyday use.
• Demonstrated how established technological systems (digital health infrastructure, data ownership) shape expectations for patient-led technology.
• Highlighted the complex dynamics of expectation in patient advocacy-led design for a gendered chronic illness.

Conclusions:

• Patient advocacy-led design offers unique possibilities but is constrained by existing technological systems and evolving user expectations.
• Understanding these dynamics is crucial for developing effective health technologies for underdiagnosed chronic conditions.
• This case study contributes to science and technology studies on self-tracking and health technology development.