Under Observation: The Interplay Between eHealth and Surveillance (Law, Governance and Technology Series Book 35)

"The essays in this book clarify the technical, legal, ethical, and social aspects of the interaction between eHealth technologies and surveillance practices. The book starts out by presenting a theoretical framework on eHealth and surveillance, followed by an introduction to the various ideas on eHealth and surveillance explored in the subsequent chapters. Issues addressed in the chapters include privacy and data protection, social acceptance of eHealth, cost-effective and innovative healthcare, as well as the privacy aspects of employee wellness programs using eHealth, the use of mobile health app data by insurance companies, advertising industry and law enforcement, and the ethics of Big Data use in healthcare. A closing chapter draws on the previous content to explore the notion that people are 'under observation', bringing together two hitherto unrelated streams of scholarship interested in observation: eHealth and surveillance studies. In short, the book represents a first essential step towards cross-fertilization and offers new insights into the legal, ethical and social significance of being 'under observation'." --publisher's description Contents 6 1 Introduction 8 References 13 Personal Health and Autonomy: An Uneasy Relationship 14 2 Unobtrusiveness in mHealth Design and Use: A Systematic Literature Study 15 Abstract 15 2.1 Introduction 15 2.2 Method 18 2.3 Results 19 2.3.1 Defining Obtrusiveness and Unobtrusiveness 20 2.3.2 Common Characteristics of Obtrusiveness 22 2.3.3 Implications of Unobtrusiveness 23 2.3.4 Diminishing Obtrusiveness via Personalisation and Control 26 2.4 Analysis 26 2.5 Conclusion 32 Acknowledgments 33 Bibliography 33 3 eHealth and Privacy in U.S. Employer Wellness Programs 36 Abstract 36 3.1 Introduction 36 3.2 Employer-Sponsored Wellness Programs 37 3.3 Personal Health Information in Wellness Programs 43 3.4 Privacy, Surveillance and Wellness Programs 49 3.4.1 Informational Privacy 49 3.4.2 Physical Integrity 53 3.4.3 Decisional Autonomy 54 3.5 Conclusions, Recommendations and Further Research 56 Acknowledgments 58 References 58 4 Use of a Wearable Device to Promote Healthy Behaviors Among Employees of a Small-to-Medium Enterprise in the Netherlands 64 Abstract 64 4.1 Introduction 64 4.2 Methods 66 4.2.1 The Case 66 4.2.2 Data Collection 66 4.3 Results 68 4.3.1 Fun Gadgets, with Preconditions 68 4.3.2 Initial Expectations: No Personal Health Change, but Team Benefits 69 4.3.3 Experiences: Caloric Input Hassles and Data Accuracy; Increased Number of Steps 70 4.3.4 Socio-ethical Dilemmas 71 4.4 Discussion 72 Acknowledgments 73 References 73 Surveillance Practices for Risk Management 75 5 Selling Passive Monitoring to Manage Risk in Independent Living: Frontline Workers in a Bind 76 Abstract 76 5.1 Introduction 76 5.2 Methods 79 5.2.1 Participants and Recruitment 79 5.2.2 Data Collection and Analysis 80 5.3 Findings 80 5.3.1 The Remote Monitoring System as Intervention 81 5.3.2 Ambivalence Under Organizational Pressure 82 5.3.3 Encouraging Adoption: Bypassing, Moralizing, Appealing to Fear, and Bargaining 83 5.3.3.1 Bypassing the Client 84 5.3.3.2 Moralizing Discourse 85 5.3.3.3 Appealing to Fear 85 5.3.3.4 Bargaining 86 5.3.4 Reluctant Adoption: The Challenge of Selling 87 5.4 Discussion 89 5.5 Limitations and Future Research 91 5.6 Conclusion 91 References 92 6 Veillance and Electronic Medical Records in Disease Management Programs in the Netherlands 94 Abstract 94 6.1 Introduction 94 6.2 Background 95 6.3 Theoretical Framework 97 6.4 Methods 98 6.5 Findings 99 6.5.1 How Electronic Medical Records Were Set up for Watching 99 6.5.2 How the Duties of Watching Are Shared Through the Records 102 6.5.3 Privacy, Openness, Secure Communication 103 6.6 Discussion 104 6.7 Conclusion 106 Acknowledgments 107 References 107 7 Profiling ‘Anomalies’ and the Anomalies of Profiling: Digitalized Risk Assessments of Dutch Youth and the New European Data Protection Regime 110 Abstract 110 7.1 Introduction 111 7.2 Overview of the Three Risk Profiling Systems 113 7.2.1 Digital Youth Healthcare Registry 113 7.2.2 Reference Index for High Risk Youth 113 7.2.3 ProKid 12–SI 114 7.2.4 Advantages of DYHR, RI and ProKid 115 7.2.5 Disadvantages of DYHR, RI and ProKid 115 7.3 Profiling Children in Light of Current and New Data Protection Rules 117 7.4 Methodology 120 7.5 Problems Raised by Profiling Systems Generally 121 7.6 Problems or ‘Anomalies’ Raised by Risk Profiles in Light of the Changes Brought by the GDPR 123 7.6.1 Constructing Risk Profile Data 123 7.6.1.1 What Risk? 123 7.6.1.2 Funding for Registering Risks? 125 7.6.1.3 Unfair Profiling? 126 7.6.2 Using Risk Profile Data 127 7.6.2.1 No Option to Register Improvements 127 7.6.2.2 No Distinction Between Perpetrators, Victims and Suspects 128 7.6.2.3 Risk Profile for a Baby Through Indirect Evidence 129 7.6.2.4 To Share or not to Share (Healthcare Information) 130 7.6.3 Erasing Risk Profile Data 131 7.6.3.1 Dealing with Erroneous Risk Registration 132 7.6.3.2 Retained Data After Expiration Remains Relevant 133 7.7 Discussion as to the Normative State of the New Data Protection Regime in Light of the Empirical Findings 134 7.8 Conclusion 135 Acknowledgments 138 References 138 8 Policy, Design and Use of Police-Worn Bodycameras in the Netherlands 142 Abstract 142 8.1 Introduction 143 8.2 How to Frame the Bodycamera? 144 8.3 Methods of Inquiry 147 8.4 The Bodycamera According to Policy Makers 148 8.5 The Bodycamera According to Designers 152 8.5.1 Guidelines 152 8.5.2 Description of the Device 153 8.5.3 Transparency of the Device 154 8.5.4 Inscribed Responsibilities 156 8.6 The Bodycamera According to Users 157 8.6.1 Preparing for the Night 157 8.6.2 In the Night 159 8.6.3 After a Night 161 8.7 Conclusion 163 Acknowledgments 164 References 164 Revisiting Key Concepts in the Interplay Between Surveillance and Health 166 9 Ubiquitous Digital Devices and Health: Reflections on Foucault’s Notion of the ‘Clinic’ 167 Abstract 167 9.1 Introduction 167 9.2 The ‘Clinic’ and the Development of Knowledge 169 9.3 Digital Technologies and the Reorganization of the Medical Field 170 9.4 Changing Status of Patients in Relation to Medical Services 172 9.5 Possible Implications for Understanding ‘the Clinic’ 174 References 176 10 Health Data for Common Good: Defining the Boundaries and Social Dilemmas of Data Commons 179 Abstract 179 10.1 Introduction: The Rhetoric, Practices and Technology of the Personal (Health) Data Commons 180 10.2 The Commons 183 10.2.1 Origins and Elements of the Commons Paradigm 183 10.2.2 Expansion of the Commons Analytical Framework 187 10.2.2.1 Patterns of Expansion 187 10.2.2.2 Technology and Expansion of the Commons Paradigm 188 10.2.3 The Commons Dilemmas 189 10.3 Constructing (Health) Data Commons 191 10.3.1 Boundaries of the Common Resource 191 10.3.1.1 All Personal Data Is Health Data 191 10.3.1.2 All Data Is Potentially Personal Data 194 10.3.1.3 Data as a System Resource, Data Ecosystems, and Group Privacy 197 10.3.2 Provision Dilemma: Interpreting Sustainability in the Data Commons 202 10.3.3 Appropriation Dilemma: Enclosure of Data 205 10.4 Conclusions and Directions for Future Research 208 References 209 Index 213 Introduction / Samantha Adams, Nadezhda Purtova And Ronald Leenes -- Unobtrusiveness In Mhealth Design And Use: A Systematic Literature Study / Maartje G.h. Niezen -- Ehealth And Privacy In U.s. Employer Wellness Programs / Anna Slomovic -- Use Of A Wearable Device To Promote Healthy Behaviors Among Employees Of A Small-to-medium Enterprise In The Netherlands / Job Rimmelzwaan -- Selling Passive Monitoring To Manage Risk In Independent Living : Frontline Workers In A Bind / Clara Berridge -- Veillance And Electronic Medical Records In Disease Management Programs In The Netherlands / Bethany Hipple Walters -- Profiling 'anomalies' And The Anomalies Of Profiling : Digitalized Risk Assessments Of Dutch Youth And The New European Data Protection Regime / Karolina La Fors-owczynik -- Policy, Design And Use Of Police-worn Bodycameras In The Netherlands / Tjerk Timan -- Ubiquitous Digital Devices And Health : Reflections On Foucault's Notion Of The 'clinic' / Samantha Adams -- Health Data For Common Good : Defining The Boundaries And Social Dilemmas Of Data Commons / Nadezhda Purtova. Samantha Adams, Nadezhda Purtova, Ronald Leenes, Editors. Includes Bibliographical References And Index. Front Matter....Pages i-vi Introduction....Pages 1-6 Front Matter....Pages 7-7 Unobtrusiveness in mHealth Design and Use: A Systematic Literature Study....Pages 9-29 eHealth and Privacy in U.S. Employer Wellness Programs....Pages 31-58 Use of a Wearable Device to Promote Healthy Behaviors Among Employees of a Small-to-Medium Enterprise in the Netherlands....Pages 59-69 Front Matter....Pages 71-71 Selling Passive Monitoring to Manage Risk in Independent Living: Frontline Workers in a Bind....Pages 73-90 Veillance and Electronic Medical Records in Disease Management Programs in the Netherlands....Pages 91-106 Profiling ‘Anomalies’ and the Anomalies of Profiling: Digitalized Risk Assessments of Dutch Youth and the New European Data Protection Regime....Pages 107-138 Policy, Design and Use of Police-Worn Bodycameras in the Netherlands....Pages 139-162 Front Matter....Pages 163-163 Ubiquitous Digital Devices and Health: Reflections on Foucault’s Notion of the ‘Clinic’....Pages 165-176 Health Data for Common Good: Defining the Boundaries and Social Dilemmas of Data Commons....Pages 177-210 Back Matter....Pages 211-213