Melbourne Law School - Research Publications

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Author: Johnston, Carolyn × End date: 2020 × Start date: 2020 ×

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    Regulating Medical Devices in the 'Internet of Things'
    Johnston, C ; Ahn, B ( 2020)
    New research explores the gap between regulation and practice in healthcare devices, particularly for type 1 diabetes, that are part of the Internet of Things.
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    Want to Record your Doctor's Appointment? Great Idea, but First, Check it's Legal
    Hyatt, A ; Johnston, C ; Prictor, M ( 2020-11-02)
    As you fire up your computer for a telehealth appointment, or prepare to walk in to see your doctor, you may be wondering whether to record your appointment. You might even think about doing it without asking permission first.
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    Ethical Considerations for Paediatrics during the COVID-19 Pandemic: A Discussion Paper from the Australian Paediatric Clinical Ethics Collaboration
    Jansen, M ; Irving, H ; Gillam, L ; Sharwood, E ; Preisz, A ; Basu, S ; Delaney, C ; McDougall, R ; Johnston, C ; Isaacs, D ; Lister, P (Wiley, 2020)
    Children have not been severely affected by SARS-CoV-2-related illness but are vulnerable to the economic and social deprivation arising from the pandemic. This document describes unique risks and burdens for children and their care givers during the COVID-19 pandemic.
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    Emerging Health Data Platforms: From Individual Control to Collective Data Governance
    Kariotis, T ; Ball, MP ; Greshake Tzovaras, B ; Dennis, S ; Sahama, T ; Johnston, C ; Almond, H ; Borda, A (Cambridge University Press, 2020)
    Health data have enormous potential to transform healthcare, health service design, research, and individual health management. However, health data collected by institutions tend to remain siloed within those institutions limiting access by other services, individuals or researchers. Further, health data generated outside health services (e.g., from wearable devices) may not be easily accessible or useable by individuals or connected to other parts of the health system. There are ongoing tensions between data protection and the use of data for the public good (e.g., research). Concurrently, there are a number of data platforms that provide ways to disrupt these traditional health data siloes, giving greater control to individuals and communities. Through four case studies, this paper explores platforms providing new ways for health data to be used for personal data sharing, self-health management, research, and clinical care. The case-studies include data platforms: PatientsLikeMe, Open Humans, Health Record Banks, and unforgettable.me. These are explored with regard to what they mean for data access, data control, and data governance. The case studies provide insight into a shift from institutional to individual data stewardship. Looking at emerging data governance models, such as data trusts and data commons, points to collective control over health data as an emerging approach to issues of data control. These shifts pose challenges as to how “traditional” health services make use of data collected on these platforms. Further, it raises broader policy questions regarding how to decide what public good data should be put towards.