Health Informatics, Discourses and the Use of Personal Health Information

319 Pages·2013·1.44 MB·English

by  Sue Whetton

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

Suzanne Gay Whetton
DipT(P), BA, Grad Dip (ContEd), MIS

Submitted in fulfilment of the requirements for the Degree of Doctor of
Philosophy

University of Tasmania

July 2013
Statement of Originality
I declare that the material in this thesis is original, and to the best of my
knowledge contains no material previously published or written by another
person except where due acknowledgement is made in the text of the thesis.
Nor does the thesis contain any material that infringes copyright.

The thesis contains no material which has been accepted for a degree or
diploma by the University or any other institution, except by way of
background information and duly acknowledged in the thesis.

Suzanne Gay Whetton Date July 2013
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Authority of Access

This thesis, titled Health Informatics discourses and the use of personal health
information: Which piper, which tune, and who pays? may be made available
for loan and limited copying and communication in accordance with the
Copyright Act 1968.

Suzanne Gay Whetton Date July 2013

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Acknowledgements
I wish to acknowledge the invaluable support and guidance provided by my
primary supervisor, Dr Daphne Habibis. Her interest and enthusiasm were
invaluable as motivators throughout the long years of part-time study. I would
also like to acknowledge the many colleagues who have offered constructive
and helpful advice. Thank you also to my family and friends for seven years of
waiting, watching and wondering.
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Abstract
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
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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.

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TABLE Of CONTENTS
Chapter 1: Introduction 1
1.1 About the study 1
1.2 Context for the study 3
1.2.1 Sensitive yet valuable information 3
1.2.2 Balancing privacy and access to personal health information 6
1.2.3 Systemic function creep 10
1.3 Contribution of the study 14
1.4 The analysis 15
1.5 Concepts 16
1.6 Chapter outlines 20
Chapter 2: Explaining the use of personal information 23
2.1 Introduction 23
2.1.1 The information society: Expanding use of personal information 24
2.2. The information society: It’s all good 26
2.3 Surveillance studies: Some good, some not so good 29
2.3.1 Historical analyses 31
2.3.2 Someone is watching: Negative/panoptic 34
2.3.3 Janus face: Neutral definitions 38
2.3.4 Privacy and surveillance 42
2.3.5 Useful explanations? 45
2.3.6 Foucault: beyond surveillance studies 48
2.4 Foucault: Power, knowledge and discourse 49
2.4.1 Modern power 49
2.4.2 Disciplinary power 50
2.4.3 Biopolitics 53
2.4.4 Personal health information and modern power 55
2.4.5 Power/knowledge/discourse 57
2.4.6 Claim-making sites 60
2.5 The power of academic disciplines 61
2.5.1 Health Informatics: Competing discourses 62
2.5.2 Discourses in health informatics: Previous studies 63
2.6 Study questions 64
Chapter 3: Research Design and Methodology 66
3.1 Introduction 66
3.1.1 Methodology 66
3.1.2 Using Foucault’s tool-box 68
3.1.3 Study design 69
3.2 Setting parameters: the privacy framework 70
3.2.1 Purpose 70
3.2.2 Texts 70
3.2.3 Methods 71
3.3 Health informatics discourse analysis 72
3.3.1 Purpose 72
3.3.2 Texts in the archive 75
3.3.3 Methods for identifying discourses 78
3.4 Relationships between discourses 85
3.4.1 Purpose 85
3.4.2 Texts/data 86
3.4.3 Methods 86
3.5 Limitations of the research design and methodology 88
Chapter 4: The privacy framework 91
4.1 Introduction 91
4.2 Defining privacy 92
4.3 Federal and state legislation 94
4.3.1 Light touch legislation 99
4.3.2 Defining personal information 100
4.3.3 Informed Consent 103
4.4 Conclusion 104
Chapter 5: The ‘to and fro’ of debate 106
5.1 Introduction 106
5.2 Official literature: Consensus 107
5.2.1 Light-touch legislation: Flexibility and responsiveness 107
5.2.2 Focus on consumer control 108
5.2.3 Trust 109
5.2.4 Shared goals 111
5.3 Critical commentaries 111
5.3.1 Practical Critique 112
5.4 How far ‘to-and-fro’? 118
5.4 Conclusion 119
Chapter 6: Health informatics discourses 121
6.1 Introduction 121
6.1.2 Health informatics: the historical narrative 122
6.2 Health informatics discourses 125
6.2.1 Scholarly discourse: An academic focus 130
6.2.2 Management discourse: Management not treatment 140
6.2.3 The Health Technology Discourse: IT is the answer 149
6.2.4 Populations discourse: Monitoring groups, not treating individuals 154
6.2.5 The clinical informatics discourse: The patient at the centre 160
6.2.6 Nursing informatics Discourse: A distinct area of expertise 166
6.3 Discussion 171
6.4 Conclusion 174
Chapter 7: Institutional supports and processes 176
7.1 Introduction 176
7.1.2 Discourse Communities 178
7.2 Shaping the academic discipline 179
7.2.1 1993: Emerging interest in the field 180
7.2.2 1999-2001: Groups of like-minded individuals 184
7.2.3 2006-2009: Communities of interest 191
7.3 Relative influence of the discourses 198
7.3.1 An emerging academic discipline 198
7.3.2 Relative influence of the discourses 200
7.4 Conclusion 207
Chapter 8: Constructing personal health information 208
8.1 Introduction 208
8.2 Constructing the problem 209
8.2.1 Scholarly discourse 210
8.2.2 Management discourse 211
8.2.3 Health Technology discourse 213
8.2.4 Populations discourse 213
8.2.5 Clinical informatics discourse 216
8.2.6 Nursing informatics discourse 217
8.3 Inclusions and exclusions 218
8.4 Conclusion 221
Chapter 9: Discussion and conclusion 222
9.1. Introduction 222
9.1.1. Context for the study 222
9.2. The study methods and findings 226
9.2.1 Effectiveness of the methodology 226
9.2.2 Analysing the privacy framework 227
9.2.3 Health informatics discourses and privacy 228
9.3 Which piper, which tune, who pays? 235
9.4 Contribution of the study and further research 238
9.5 Conclusion 240
References 242