Disconnective care: Chronic illness and digital patienthood

As the development of new digital welfare solutions to an increasing extend is carried out in public-private innovative partnerships, care and digital practices related to patienthood are changing. This chapter brings attention to one of the paradoxes emerging when patients living with chronical illness receive care in the public healthcare sector: The more entangled with digital technologies and data driven healthcare becomes, the more the recipients of care, the patients, might - in varying degrees and for different reasons – incorporate disconnection as part of their digital patienthood. I draw on a pilot study consisting of an expert interview with an employee at a global tech-pharma company and two IBD- (inflammatory bowel disease) patients to tease out ways that disengagement and disconnection can be understood as “disconnective care” within chronic care infrastructures. Two narrative vignettes are presented and illustrate 1. Digital patienthood as intensifying the need for boundary work and amplifying ambivalences tied to being continuously disengaged in a moral economy of (health) data sharing and 2. How detoxing is negotiated when full disconnection is not an option because responsibility for illness management is distributed between patient and digital media technologies. I also draw attention to the need for an ethics of “response-ability” in relation to chronically ill patients navigating digital patienthood as part of their everyday life.