ACHEEV Symposium on Ethics of Health Data Sharing

ACHEEV Symposium on Participatory Approaches to Ethical Governance of Health Data Sharing in Australia

Advances in digital technologies, analytics and artificial intelligence have created vast quantities of health data and enabled their use for purposes ranging from clinical care to research and innovation. The Australian Centre for Health Engagement, Evidence and Values (ACHEEV) has recently led projects examining the complex ethical, legal and social implications of health data sharing, privacy, consent requirements, public benefit, data security and data ownership. Our research has also highlighted the need for greater clarity in legal, ethical and policy frameworks, as well as the importance of transparent governance and community engagement.

This full-day symposium will convene a diverse group of interdisciplinary scholars and stakeholders from across health, research, policy and community sectors to discuss participatory approaches to the ethical and regulatory governance of health data sharing in Australia.

This project is supported by the NSW Agency for Clinical Innovation and Digital Health CRC Limited (DHCRC). DHCRC is funded under the Australian Commonwealth's Cooperative Research Centres (CRC) Program.

International keynote speaker

Amy Darlington, Director, Policy Partners, United Kingdom.

Amy specialises in deliberative engagement, participatory policy formation, strategy development, strategic communications and stakeholder engagement. She was the Engagement Lead for OneLondon , a collaborative of London's five Integrated Care Systems. In 2020, OneLondon held a Citizen Summit, the world's largest public deliberation on the use of health and care data.

Confirmed speakers

• Tara Dimopoulos-Bick, Stream Lead for Design, Capability and Experiential Evidence, Agency for Clinical Innovation, NSW Health.
• Professor Louisa Jorm, Foundation Director, Centre for Big Data Research in Health, University of New South Wales.
• Dr Felicity Flack, Senior Manager, Strategy and Services, Population Health Research Network.
• Associate Professor Courtney Ryder, College of Medicine and Public Health, Flinders University.
• Associate Professor Rebekah McWhirter, ANU College of Law, Governance and Policy.
• Emeritus Professor Dianne Nicol, Faculty of Law, University of Tasmania.
• Dr Heidi Green, ACHEEV, University of Wollongong.
• Dr Yves Saint James Aquino, ACHEEV, University of Wollongong.

The symposium will include a panel featuring members of an ACHEEV-led citizens' jury on health data sharing.

Attendance is free, but places are limited. Please register as early as possible.

Contacts: 

Dr Yves Saint James Aquino (yves_aquino@uow.edu.au)
Dr Heidi Green (heidi_green@uow.edu.au)