“I Go On The Internet; I Always, You Know, Check To See What’s New”: Chronically Ill Women’s Use of Online Health Information to Shape and Inform Doctor-Patient Interactions in the Space of Care Provision

Abstract

Information about health, medications, and illness management programs is becoming increasingly available online. For women living with medically unexplained illnesses such as fibromyalgia syndrome (FMS), explorations in cyberspace and the information gathered from the Internet as a result can be used to enlighten, and sometimes misinform, them about the chronic illnesses with which they are living. In this paper, I use data generated from 55 in-depth interviews with women living with FMS in Ontario, Canada to illustrate the relational connections between cyberspace and the space of care provision. More specifically, I demonstrate the ways in which information gathered online is used to inform, and prepare for, doctor-patient interactions in the space of care provision as a form of engaging in “patient agency.” The paper provides a useful glimpse into what it is like to be a patient in the “information age.” The analysis also assists in addressing the question: what is it that patients do with the health information they gather online? I conclude by revisiting how accessing health information via the Internet
has implications for women’s performances as patients and the (re)negotiation of traditional constructions of power in the doctor-patient relationship.