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Data relating to an individual’s physical and mental health and condition can reveal extremely sensitive information. Valuable health data also underpins improvements in health care and can be useful for other government and commercial purposes. How can the law protect the principle of medical confidentiality and enable the data flows necessary for a modern learning healthcare system, public health, and other public interest purposes?
Health privacy and data protection expert Mark Taylor considers the relevant law and governance in Australia and comparable jurisdictions. This subject will provide students with an advanced and specialised knowledge of health data governance, including relevant privacy and data protection law. It will invite critical consideration of relevant law benchmarked against the European Union General Data Protection Regulation and other international standards, such as the Recommendation of the Organisation for Economic Co-operation and Development (OECD) Council on Health Data Governance.
Principal topics include:
- Legal concepts of ‘personal health data’, ‘identifiability’, and ‘public interest’
- Transparency, informed consent, and respect for individual objection
- Confidentiality and third-party access, including family members, researcher, public health and government
- Feedback of incidental findings and the ‘right not to know’
- Oversight and approval mechanisms, with consideration of issues raised by increasing use of new techniques of machine learning and analysis of big data
- International and cross-border transfer
Intended learning outcomes
A student who has successfully completed this subject will:
- Have an advanced and integrated understanding of legal rules, concepts and principles relevant to health data governance in the context of privacy and data protection law in Australia and comparable jurisdictions
- Be able to critically examine, analyse, interpret and assess the effectiveness of the legal rules, principles and concepts
- Be an engaged participant in debate regarding emerging and contemporary issues in the field, such as appropriate third party (including family member) access to health data, changing boundaries regarding individual care and indirect care (eg. research) uses, feedback of incidental findings, and algorithmic accountability in the health care context
- Have the cognitive and technical skills to independently examine, research and analyse existing and emerging legal issues relating to health data governance in Australia and other comparable jurisdictions
- Have the cognitive and technical skills to generate critical and creative ideas relating to health data governance and to critically evaluate existing governance frameworks
- Have the communication skills to clearly articulate and convey complex information regarding health data governance to relevant specialist and non-specialist audiences.
Last updated: 10 November 2019