ACHEEV Symposium on Ethical Governance of Health Data Sharing in Australia

This Symposium features interdisciplinary speakers who will discuss participatory approaches to ethical governance of health data sharing.
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!

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

GETTING TO THE VENUE

Note that the Innovation Campus is in a different but nearby suburb to the main UOW Wollongong Campus.

Venue: Aspire Conference and Function Centre, UOW Innovation Campus

Address: Innovation Campus, Squires Way, North Wollongong, NSW, 2500

Train from Sydney

The Innovation Campus is located between North Wollongong and Fairy Meadow railway stations.

• Fairy Meadow station: This station is approximately a 15-minute walk to the Innovation Campus. You can take the free Gong Shuttle (55C) that stops near the Innovation Campus by going to nearby bus top at Elliotts Rd corner Grafton St. Note that the South Coast Line express service does not stop at Fairy Meadow.
• North Wollongong station: This station is approximately a 21-minute walk to the Innovation Campus. The nearest stop for the free Gong Shuttle (55C) is the stop at the Princes Hwy after Lysaght St, which is ten minutes away from the North Wollongong Station. South Coast Line express service stop at this station.
• Wollongong station: This station is farther away, but a great option since the bus stop is very close to the station. You can take the free Gong Shuttle (55A not 55C). South Coast Line express service stop at this station.

Free Gong Shuttle

Route numbers: 55A (counterclockwise direction) and 55C (clockwise direction). Hours of Operation during weekdays:

• 7:00am–6:00pm (every 10 minutes)
• 6:00pm–10:00pm (every 20 minutes)

Parking

The University of Wollongong’s Innovation Campus offers convenient short-term parking for visitors in the P1 carpark. This carpark is located on the southern side of the Science Space and indicated on the Innovation Campus maps.

Payment is made through the CellOPark app. When you park in the P1, ensure you open the CellOPark app, and start your session.

For rates, please visit https://www.innovationcampus.com.au/getting-here-and-parking/.

Maps

Innovation campus map: PDF

Innovation campus map: Interactive

Innovation campus map: Parking

Agenda

🕑: 09:45 AM - 10:00 AM
Registration
🕑: 10:00 AM - 10:05 AM
Acknowledgement of Country
Host: Assoc Prof Chris Degeling
🕑: 10:05 AM - 10:15 AM
Opening Address
Host: Prof D'Maris Coffman
🕑: 10:15 AM - 11:15 AM
Experiences of planning, participation and translation of jury processes
Host: Dr Yves Saint James Aquino (UOW)
🕑: 11:15 AM - 12:00 PM
From data access to data trust: a researcher’s perspective
Host: Professor Louisa Jorm (UNSW)
🕑: 12:00 PM - 12:40 PM
Lunch
🕑: 12:40 PM - 01:25 PM
How to be a Data Ally & Champion
Host: Assoc Professor Courtney Ryder (Flinders)
🕑: 01:25 PM - 02:10 PM
Building data governance with community (Indigenous methods)
Host: Associate Professor Rebekah McWhirter (ANU)
🕑: 02:10 PM - 02:55 PM
Developing a framework for the governance of health genomics in Australia
Host: Professor Dianne Nicol (UTas)))
🕑: 02:55 PM - 03:10 PM
Afternoon tea
🕑: 03:10 PM - 03:55 PM
Challenging the myths of health data sharing
Host: Dr Felicity Flack (Data Connect Australia)
🕑: 03:55 PM - 04:45 PM
Plenary: the future of data sharing in Australia
🕑: 04:45 PM - 04:50 PM
Closing
🕑: 05:00 AM - 10:00 PM
Post-symposium snacks (different location)

Info: Everyone is welcome to join us at Pepe's (Novotel Wollongong), a few minutes drive from Innovation Campus. Food will be covered, but not alcohol.