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15 - Health Research, eHealth, and Learning Healthcare Systems

Key Approaches, Shortcomings, and Design Issues in Data Governance

from Part IV - Balancing Regulation, Innovation and Ethics

Published online by Cambridge University Press:  08 September 2022

Marcelo Corrales Compagnucci
University of Copenhagen
Michael Lowery Wilson
University of Turku, Finland
Mark Fenwick
Kyushu University, Japan
Nikolaus Forgó
Universität Wien, Austria
Till Bärnighausen
Universität Heidelberg
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The pressure to collect more health data and use that data more effectively is mounting as healthcare systems face greater challenges. However, the risks of increasing health data collection and making our health data work harder are myriad. Given that ‘good outcomes’ in relation to health data usage will be context specific and temporally contingent, the emphasis here is on fit-for-purpose instruments and good practice, acknowledging that health data usage is mediated not only through law, but also through governance structures around data resources themselves. This chapter therefore reviews the Canadian health data ecosystem, examining its federal and provincial legislative elements (with an emphasis on Nova Scotia). It then critiques that ecosystem, bearing in mind the needs of learning healthcare systems. In doing so, it highlights four ecosystem shortcomings, which are grounded in no small part on the perceived competition between private and public interests, and the poor alignment between contemporary data uses and traditional protections associated with autonomy (consent) and privacy (anonymisation). Finally, it offers some key considerations for ecosystem design, addressing specifically social license to operate and the value foundation of both legislation and repository governance instruments.

AI in eHealth
Human Autonomy, Data Governance and Privacy in Healthcare
, pp. 423 - 450
Publisher: Cambridge University Press
Print publication year: 2022

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