Australian Centre for Health Engagement, Evidence and Values, University of Wollongong

Abstract

The Australian Centre for Health Engagement, Evidence and Values (ACHEEV) is a new venture of the University of Wollongong. ACHEEV’s work includes public engagement, values-based health social science, and deliberative health research: our mission includes bringing deliberative approaches and methods into public health and health services. Our presentations and the discussion will focus on what it means to bring deliberation into health structures, cultures, governance and practices.

Australian health professionals, researchers and organisations often recognise the value of consumer involvement or community consultation practices. However deliberation, and engaging with publics, are less familiar. Deliberation is arguably not an easy fit with health systems, which tend towards highly structured, technocratic, top-down decision making, dependence on and respect for (especially medical) professional autonomy, and a strong commitment to certain epistemic values operationalised as ‘evidenced based’ healthcare, medicine and public health. These characteristics can appear to leave little room for authentic and actionable deliberative engagement with relevant publics and their diverse values.

We will present several examples of ACHEEV’s deliberative projects to illustrate how we are approaching this challenge. The first set of projects has been designed to inform and nuance a large national research program on overdiagnosis. The second has been informed by an apparently increasing expectation from government that publicly-generated health system data should be shared with private industry for research and development. The third was commissioned to shape the construction of pandemic disease responses in Australia. Each of these examples offers a different set of relationships, a different kind of charge, a somewhat different methodological approach, and a different potential outcome. In discussion we will welcome an opportunity to consider the use of deliberative methods not to refashion democracy in a global or macro sense, but to (modestly) attempt to distribute governance in a domain that matters deeply to many publics, and which is usually left almost entirely to health technocrats, researchers and experts.

About the speakers

Stacy Carter is the Founding Director of ACHEEV with a background in public health, applied ethics and social science. She is a chief investigator on NHMRC and ARC-funded projects and collaborations including Wiser Healthcare, The Algorithm Will See You Now, and Integrated Futures for the use of Motorised Mobility Devices. She works especially on contentious or contested health issues including overdiagnosis and overtreatment, screening, vaccine refusal, and artificial intelligence in healthcare. Twitter: @stacymcarter.

Annette Braunack-Mayer is Head of the School of Health and Society at the University of Wollongong.  Her background is in bioethics and public health and she undertakes research, often using deliberative methods, in health services research and public health ethics and policy. Her current funded projects include community views on big data in health and tertiary education, and health and social services for older Aboriginal and Torres Strait Islander peoples.

Chris Degeling is Senior Fellow at the Australian Centre for Engagement, Evidence and Values. As a social scientist with a background in veterinary medicine – ­and expertise in qualitative and deliberative methodologies – Chris’ research focuses on the intersection of public health ethics, public health policy and emerging issues at the human-animal-ecosystem interface. Recent NHMRC and Commonwealth and State government funded projects focus on bringing citizens and service users into deliberation on policy questions surrounding the technological enhancement of communicable disease surveillance systems, pandemic vaccination strategies and the pursuit of TB elimination in Australia.