Workshop Australasian Association of Bioethics and Health Law Conference

Action to deliver a national health data system for Australia has begun.  This system will link data from primary care, public hospitals and, ultimately, private sector providers to deliver an end-to-end account of the patient journey across the health system. It will also offer researchers a comprehensive source of information on the health of the Australian population for use outside of routine clinical care.

General practice data are a central component of this system.  However, the current ethical, legal and policy framework regulating access to general practice data does not provide clear guidance for stakeholders. This panel will explore the ethical, legal and policy issues involved in using general practice data for research.

Prof Annette Braunack-Mayer (facilitator) will provide an overview of the research context in which this exploration takes place (10 minutes). Individual panellists will explore:

• Dr Carolyn Adams: the current regulatory framework and whether it facilitates or impedes the appropriate use of general practice data for research (10 mins)
• Yves Saint James Aquino: the views of chairs of human research ethics committees on the ethical acceptability of using general practice data for research (15 mins)
• Professor Justin Beilby: the impact of this uncertainty on the participation of general practitioners in sharing and linking data (10 mins)
• Dr Carolyn Adams: the perspectives of policy makers and other stakeholders on a way forward (15 mins)
• Prof Mark Taylor: a critical commentary (10 minutes)
• Questions (20 mins)