The Wallenberg Foundations have approved funding for the DIGSUM research project EndoSisters: Information work and peer-support in a digitally embodied patient movement — a three-year project analysing the online patient movement related to endometriosis, a chronic gynaecological condition affecting 10% of women.
Endometriosis sufferers often prefer to self-manage their care due to fear of stigmatisation and a lack of faith in medical practitioners. This encourages the use of digital communication technologies – the internet and social media – as they can function as informal and alternative routes to information and social support.The EndoSisters project is interested in experiential collective knowledge production, as well as in self-organised peer support practices, through social media. We analyse how authoritative knowledge about endometriosis is collectively gathered, negotiated and challenged, and what the role of this knowledge is for enabling the exchange of social support within the community. The project is to be headed by professor Simon Lindgren, alongside researchers Carita Bengs (Department of Sociology, Umeå University) and Lorna Richardson (University of York, UK).