ABSTRACT
This chapter focusses on and discusses cancer patients’ social media practices as a particular type of patient participation through an analysis of the cancer storytelling project of the Swedish-Brazilian patient Fabian Bolin (born 1987). Empirically the chapter explores the different storytelling platforms used and created by Bolin and includes an online interview with him from May 2018. In the chapter Bolin’s project is framed theoretically through the concept of “the participatory patient”, which is a certain type of patient behavior characterized by an increased desire for visibility, by a noncompliant attitude towards being treated purely as a medical object and by having a fantasy of “knowledge as power” - the idea that knowing and continuously researching your body will also guarantee subjective agency and your ability to act on illness in constructive ways. The participatory patient of today is thus also often a patient able and willing to engage with his or her own biology through digital health resources on the internet and social media: e.g., patient forums, homepages of medical organizations, medical apps, patient blogs and profiles and citizen-led crowdfunding for treatment or research. The analysis of the Bolin case outlines the multiple forms of value produced by Bolin’s storytelling project, where marketplaces and safe spaces for peer support seem to merge through participatory patient practices but also on the potential clashes between this “platformed multivalence” and “public values” like transparency, equal treatment and privacy.
