As the development of new digital welfare solutions to an increasing extent is carried out in public–private innovative partnerships, the provision of care and the practice of patienthood are changing. In this chapter, I draw on a pilot study consisting of an expert interview with an employee at a global tech-pharma company and two patients with IBD (inflammatory bowel disease) to tease out ambivalences and ways that disengagement and disconnection emerge as “disconnective care” in digital patienthood. Two narrative vignettes are presented and illustrate 1) digital patienthood as reinforcing the need for “boundary work” within a moral economy of (health) data-sharing, and 2) how partial disconnection is negotiated when full disconnection is not an option because of the everyday management of illness being dependent on digital media technologies. I point to the need for an ethics of “response-ability” in relation to chronically ill patients navigating digital patienthood as part of everyday life.
This study is part of the “Datafied Living” project funded by Danmarks Frie Forskningsfond (grant no. 0132-00080B).