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EndoSisters: Information work and peer-support in a digitally embodied patient movement

Research project This project is a case study of how women suffering from endometriosis use the internet and social media to cope with their condition. The case study relates to a broader research interest in how various health social movements (HSMs), and more specifically embodied health movements, are using the affordances of digital media to enable user-driven forms of knowledge gathering, and knowledge production, as well as peer-support practices.

In this project, we approach the active and emergent endometriosis patient community online (broadly referred to in the project title as ‘EndoSisters’) as an example of what we call a “digitally embodied patient movement”. Hereby we contribute to the scholarly understanding of experiential collective knowledge production, as well as the function of self-organised peer support practices through social media for sufferers of chronic illnesses.

Head of project

Project overview

Project period:

2018-07-01 2021-07-01

External funding

Marianne and Marcus Wallenberg Foundation

External funding