About this Event
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 that examined 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.
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.
- Emerita Professor Dianne Nicol, Faculty of Law, University of Tasmania
- Professor Ainsley Newson, Faculty of Medicine and Health, University of Sydney
- 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 space is limited. Please register as soon as you can!
Bios
(Alphabetical by last name)
Yves Saint James Aquino, Research Fellow, Data and AI Theme Lead, Australian Centre for Health Engagement, Evidence and Values
Yves is a philosopher and doctor of medicine with expertise in empirical bioethics. His current focus is examining the ethical, legal, and social issues of artificial intelligence and big data in health care. He is an emerging leader in using deliberative democratic methods to examine community attitudes about emerging health technologies and practices. He is the editor-in-chief of Research Ethics journal, and co-lead of the Australasian Association of Bioethics and Health Law’s Empirical Ethics Stream.
Ms Tara Dimopoulos-Bick, Agency for Clinical Innovation, NSW Health
Tara Dimopoulos-Bick is the Stream Lead for Design, Capability and Experiential Evidence at the ACI. She works at the intersection of lived and living experience, evidence and innovation, bringing consumers, clinicians and health leaders together to develop and scale approaches that deliver more person-centred, equitable and sustainable healthcare.
Professor Louisa Jorm, Foundation Director, Centre for Big Data Research in Health, University of New South Wales.
Professor Louisa Jorm is a leading Australian epidemiologist and health data scientist, serving as the Foundation Director of the Centre for Big Data Research at UNSW. She specialises in using large-scale, linked administrative health data to generate real-world evidence for improving healthcare, cardiovascular risk prediction, and end-of-life care.
Dr Felicity Flack, Senior Manager, Strategy and Services for the Population Health Research Network
Felicity Flack is a senior manager with the Population Health Research Network and has many years’ experience developing Australia’s national data linkage infrastructure. Her work focuses on the governance, legal and operational challenges of data sharing, including cross-jurisdictional linkage and navigating complex, distributed data systems.
Associate Professor Rebekah McWhirter, ANU College of Law, Governance and Policy
A/Prof Bek McWhirter is based at the ANU School of Law. Her research focuses on identifying how law can support better and more equitable health outcomes, particularly in relation to data sharing and health data governance.
Professor Ainsley Newson, Professor of Bioethics, The University of Sydney, Australia.
Ainsley Newson is an internationally recognised scholar of ethical aspects of genomics, she draws on her interdisciplinary training in science, law and bioethics to critically consider the responsible, equitable and sustainable implementation of genomics in human health. Ainsley’s current research considers ethical issues in genomic screening and governance of genomic data. She has advised national and international governments, organisations and consortia, and has led major interdisciplinary research initiatives. Ainsley is also establishing practices regarding the formal involvement of patients as co-investigators in funded research.
Professor Dianne Nicol, Distinguished Professor Emerita and member, Centre for Law and Genetics, Law School, University of Tasmania
Dianne Nicol was formerly Distinguished Professor of Law and Director of the Centre for Law and Genetics at the University of Tasmania. She has a background in science and law. Dianne’s research focuses on the governance of emergent health technologies, and how this is shaped by ethical, legal and social considerations.
Assoc Professor Courtney Ryder, Discipline Lead - Trauma and Injury, Co-Director of the FHMRI Health Equity Impact Program
A/Prof Courtney Ryder is an Aboriginal injury epidemiologist and Matthew Flinders Fellow, specialising in data-driven, community-engaged research. Her work integrates Indigenous Data Sovereignty and Governance, multi-methods, and relational approaches to improve health equity. Ryder leads ahigh-impact injury research program that advances community-led evidence generation, strengthens partnerships, and translates data into culturally grounded policy and practice to improve health and wellbeing outcomes for First Nation communities.
About ACHEEV
The Australian Centre for Health Engagement, Evidence and Values (ACHEEV) was established in January 2019. Our work focuses on health: the health of people, other animals, society and the planet, and how all of these things are connected. Our mission is to make health systems more inclusive and democratic. In everything we do, we ask how we can work towards greater justice and equity. Visit our website to know more.
Banner image: Photo by Markus Winkler on Unsplash
Event venue & nearby stays
Aspire Conference and Function Centre, Innovation Campus University of Wollongong, Innovation Way, North Wollongong, Australia
Concerts, fests, parties, meetups — all the happenings, one place.