Health informatics discourses and the use of personal health information : which piper, which tune, who pays?

This study poses the question 'health informatics: which piper, which tune, and who pays?' to explore issues of power and influence in the use of personal health information in Australia. It draws on the work of Michel Foucault to explore how understandings about the use of personal health information facilitate its expanding use. Of particular interest is the way in which the health informatics community influences these understandings. The study begins with the argument that increasing use of personal health information for secondary purposes is symptomatic of a broader societal trend of expanding information gathering and surveillance practices. It further argues that many of these practices move beyond accepted monitoring to become surveillance which may result in discrimination, disadvantage or social exclusion. The discipline of surveillance studies provides the context for exploring these arguments. Surveillance scholars draw on a range of sociological theories to explore and explain expanding uses of personal information in contemporary society. However, surveillance literature focuses primarily on the processes and consequences of these activities rather than on explaining how or why they occur. Michel Foucault's conceptualisation of information gathering and surveillance as part of a network of modern disciplinary power provides an explanation of the how and why. Therefore, this study locates its analysis within the context of contemporary surveillance studies while utilising Michel Foucault's arguments about the relationship between modern power, knowledge and discourse. This enables the study to explore links between the views of the health informatics community, the construct of the Australian privacy framework and systemic expansion of information gathering practices. The study reviewed legislation and associated documents related to Australia's privacy framework. It identified a privacy/public interest dichotomy as the dominant approach to managing use of personal information and argues that this construct facilitates expanded uses of personal information on the basis of public interest. A Foucauldian influenced discourse analysis of the academic discipline of health informatics identified six discourses, all of which constructed information management issues in terms of this privacy/public interest balance. The study concludes that the health informatics community is a claim-making site with the potential to shape understandings about the use of personal health information in Australia. However, aspirational goals of the discipline work to discourage critical analyses of the privacy/public interest dichotomy. This creates the potential for the health informatics community, either wittingly or unwittingly, to support expanding use of personal information for activities that may result in increased monitoring and control of individuals, groups and the community as a whole.