8B. HIV&AIDS Invited Speaker Session: Social, political & cultural aspects: Data justice: how do we ensure ethical and equitable data for public health action?
Tracks
Track 2
Tuesday, September 16, 2025 |
3:30 PM - 5:00 PM |
Details
All of us are involved in and implicated by data. We produce, synthesise, and evaluate information in clinical records, service evaluations, in formal research studies, and on social media. In the HIV response, data is key to knowing whether we are achieving the right targets and to strategise resource allocation for those who are ‘left behind’.
But what are the ethical and social justice dimensions of data? Who ‘owns’ data, or who has stewardship over data? How do we incorporate data collection within person-centred practices? And how do we ensure that people living with HIV and other affected communities are involved in decision-making about data?
Speaker
Dr Anthony Smith
Research Fellow
Centre for Social Research In Health, UNSW Sydney
Setting the scene: key data studies terminology
3:30 PM - 3:37 PMBiography
Anthony K J Smith is a Research Fellow at the Centre for Social Research in Health, UNSW Sydney, and Lecturer at the School of Population Health, Curtin University. He is a qualitative researcher and sociologist in HIV, sexual health, and LGBTQ+ health.
Professor James Ward
Director
UQ Poche Centre for Indigenous Health original Health
Data stewardship and data sovereignty
3:37 PM - 3:49 PMBiography
A/Prof Alexander McClelland
Associate Professor
Carelton Univesity
PLHIV meaningful involvement in decision-making about data
3:49 PM - 4:01 PMBiography
Alexander McClelland’s public-facing and community-engaged research program is focused on the intersection of life, law, and illness. As someone living with HIV, he aims to develop new qualitative knowledge to support the realization of rights to bodily autonomy for people living with HIV. A fundamental orientation of McClelland’s work the principles of Nothing About Us, Without Us, and the Greater and Meaningful Involvement of People with HIV. Bringing together the fields of critical criminology, surveillance studies, feminist social research, science and technology studies, and critical public health, McClelland’s work attends to understanding the impacts of criminalization processes and public health surveillance.
Professor Kath Albury
Professor of Media and Communication
Swinburne University of Technology
Data capabilities / inclusive design
4:01 PM - 4:13 PMBiography
Kath is an Australian Research Council (ARC) Future Fellow, leading the 'Digital and data capabilities for sexual health policy and practice' reseach project (2022-2026). Her past projects have investigated young people’s practices of digital self-representation, and the role of user-generated media (including social networking platforms and dating apps) in young people’s formal and informal sexual learning, safety and wellbeing practices.
Kath is an Associate Investigator in the Swinburne Node of the ARC Centre of Excellence for Automated Decision-Making and Society (ADMS). She co-leads the ADMS' 'Critical Capabilities for Inclusive AI' project, and is a Chief Investigator on the Swedish/Australian collaboration 'Digital sexual health: Designing for safety, pleasure and wellbeing in LGBTQ+ communities' (2022-2025), with Professor Jenny Sundén (Södertörn University) and Dr Zahra Stardust (QUT).
Her recent co-authored books include: 'Everyday Data Cultures' (with Jean Burgess, Anthony McCosker and Rowan Wilken, Polity 2022) and 'Data for Social Good: Non-Profit Sector Data Projects' (with Jane Farmer, Anthony McCosker and Amir Aryani, Palgrave Macmillan Open Access 2023).
Mr Aaron Cogle
Director
National Association of People With HIV Australia (NAPWHA)
Cyber and data security for people living with HIV
4:13 PM - 4:25 PMBiography
HIV&AIDS Session Chair
Olivia Hollingdrake
Associate Professor
LaTrobe University
John Rule
Senior Research Manager
NAPWHA
