TY - CHAP
T1 - The participatory patient
T2 - Exploring the platformed multivalence and public value of cancer storytelling on social media
AU - Stage, Carsten
PY - 2019
Y1 - 2019
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85084593176&partnerID=8YFLogxK
M3 - Book chapter
SN - 978-0367218386
T3 - Routledge Research in Cultural and Media Studies
SP - 147
EP - 164
BT - Cultures of participation
A2 - Eriksson, Birgit
A2 - Stage, Carsten
A2 - Valtysson, Bjarki
PB - Routledge
CY - Abingdon
ER -