Melbourne School of Government - Research Publications

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    Citizen Science for One Digital Health: A Rapid Qualitative Review of Studies in Air Quality with Reflections on a Conceptual Model
    Kariotis, T ; Borda, A ; Winkel, K ; Gray, K (Ubiquity Press, 2022)
    The concept of One Health, a system-based approach that acknowledges the interdependence of human, animal, and ecosystem health, has grown in prominence over the past few decades. This transdisciplinary concept is increasingly important as the climate crisis, directly and indirectly, impacts all aspects of the planetary web of life. In tandem with the rise of One Health has been the increasing adoption of digital technologies into healthcare practice and within methods used to research human and environmental health. Emerging at the intersection of One Health and Digital Health is the idea of One Digital Health. This syncretic concept explores the opportunities that digital health presents to further the utility and operationalisation of One Health. A notable feature of the One Digital Health model is the role of citizen engagement. This feature aligns the digital approach with many One Health interventions that use citizen science to improve human, animal, and environmental health. This paper reports the results of a rapid review followed by a deep-dive into several representative studies exploring the intersections of One Health, digital health, and citizen science to identify new domains of innovative practice that supports resilience in the face of climate change and environmental health hazards. A focus on air quality reflects its importance in the One Health literature.
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    Knowledge co-creation in participatory policy and practice: Building community through data-driven direct democracy
    Godinho, MA ; Borda, A ; Kariotis, T ; Molnar, A ; Kostkova, P ; Liaw, S-T (SAGE PUBLICATIONS INC, 2021-01)
    Engaging citizens with digital technology to co-create data, information and knowledge has widely become an important strategy for informing the policy response to COVID-19 and the ‘infodemic’ of misinformation in cyberspace. This move towards digital citizen participation aligns well with the United Nations’ agenda to encourage the use of digital tools to enable data-driven, direct democracy. From data capture to information generation, and knowledge co-creation, every stage of the data lifecycle bears important considerations to inform policy and practice. Drawing on evidence of participatory policy and practice during COVID-19, we outline a framework for citizen ‘e-participation’ in knowledge co-creation across every stage of the policy cycle. We explore how coupling the generation of information with that of social capital can provide opportunities to collectively build trust in institutions, accelerate recovery and facilitate the ‘e-society’. We outline the key aspects of realising this vision of data-driven direct democracy by discussing several examples. Sustaining participatory knowledge co-creation beyond COVID-19 requires that local organisations and institutions (e.g. academia, health and welfare, government, business) incorporate adaptive learning mechanisms into their operational and governance structures, their integrated service models, as well as employing emerging social innovations.
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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.