Australian Patient Organizations: Using Digital Technologies to Engage Health Citizen Communities in Health Policy

Background

Information and communication technologies (ICT) and the internet particularly continue to be portrayed as radically transformative of civil society. The qualities of the internet, its decentralized and distributed character, and the ease and speed with which information can be distributed have been seen by many as forces to strengthen civil society and the participation of citizens in the design of government policies and services (Chadwick & Howard, 2008; Gibson, 2009; Williamson, 2009). ICT have been hailed as democratizing the relationship between health care systems and their consumers. More informed patients it is said will participate as equals in their individual treatment decision-making, and in the transformation of health policies and services (Wathen, Wyatt & Harris, 2008). It has become commonplace in science and technology studies or science, technology and society (STS), to critique such technological determinist arguments that proceed from the characteristics of a technology to social and behavioral change, assuming that the technology itself will drive change (MacKenzie & Wajcman, 1999). This chapter starts from the assumption that there are no a priori boundaries between the technical and the social, between technoscience on the one hand and politics on the other, providing neat categories that can be studied as a simple linear matter of the impact of a technology on society (Asdal, Brenna & Moser, 2007). These are conceptual boundaries of our making, found in our imagination, and as researchers we have as Latour suggests (Latour, 1987) followed the actors and their categories. Accordingly, this chapter sets out to show the entanglement in everyday, real-life, empirical situations of human and non-human actors, material and symbolic practices and resources, values and machines. To do otherwise is to dodge our responsibilities as researchers.