Of time and troubles: Patient involvement and the production of health care disparities

Abstract

Patient involvement in care practice has many and diverse proponents. It is endorsed by health care institutions and promoted by community agencies representing people with illness. A vast literature documents the benefits of patient involvement and describes ways to enable it. This article contributes to a critical literature on patient involvement by documenting the work done by women with cancer in relation to care timelines and in responding to troubles with care. We highlight continuities and disjunctures between this work, and discourses of patient involvement as they manifest in documents circulating at an Ontario cancer centre. In making visible the social and material resources that underpin successful involvement, the study shows how initiatives that endorse and promote ‘the involved patient’ can function to exacerbate health care and social disparities. As well, the study extends analysis of the individualization and privatization of health by showing how contemporary discourses of involvement enlist patients to monitor and sustain not only their own health, but also the health care they receive.