Mapping Patient Involvement in Drug Coverage Recommendations: Boundary Work in the Context of Canada's Health Technology Assessment Agency

Abstract

This dissertation investigates the Patient Input Program, the context from which it arose and the struggles that it evokes for rare disease patients. By drawing on the concepts of boundary work, boundary object, public involvement and needs talk, the dissertation explores a local application of patient involvement as a construction of social participation and site where the needs of rare disease patients are contested among the actors, groups and institutions involved in the Health Technology Assessment (HTA) network. A case study approach was chosen to explain the intrinsic aspects of the Patient Input Program, showing the shaping of the Program and its shaping effect on societal agents and knowledge forms, particularly with respect to rare disease patients. Their experience in the Patient Input Program provides insights on the complexities and controversies rooted within the program, and links more broadly to certain system inadequacies.