The Fantastical Empowered Patient

Abstract

In the United States, clinical interventions and regulatory health institutions promote patient engagement and empowerment as a novel transformation in healthcare delivery, with the promise of eliciting increased patient participation in their own health care. The concept of patient empowerment, however, obscures how closely related this discourse is to established doctrines of patient compliance/adherence. Empowerment reconstitutes the fundamentally authoritarian ideology of adherence and compliance into a neoliberal ideology of self-actualization and self-management. This chapter explores how communities of people living with type 1 diabetes have designed their own diabetes management tools, exemplifying empowered and self-managing patients. Their efforts are a patient-led response to significant gaps in diabetes care in current commercial devices and regulatory restrictions. These self-designed diabetes systems expose the limits of regulatory and commercial commitments to patient empowerment. Moreover, the institutional demands on the individual to achieve empowerment neglect the social, economic, and political obstacles for many to manage their chronic health conditions.