Dr Steven McEachern1, Dr. Frankie Stevens2, Dr. Nichola Burton3, Dr. Kristan Kang4
1Australian Data Archive, Acton, Australia
2AARNet, Gold Coast, Australia
3ARDC, Perth, Australia
4ARDC, Canberra, Australia
(“unit record data”) to address major research and policy questions in Australia in recent years. This interest spans a variety of research domains – including linked administrative data for social policy analysis; integration of patient, health service and biomedical data to study health outcomes; and integration of long-term population data with longitudinal cohort data to study gender role attitudes.
This growth in demand however has resulted in an identified need for platforms and facilities capable of supporting such data in a secure and transparent way. There is a need for such facilities to enable research with sensitive data to be completed effectively and efficiently while meeting the privacy and confidentiality expectations of both subjects (i.e. people) and data custodians (across academic, government and elsewhere).
This need has not been well-represented within the eResearch community in general. The Population Health Research Network providing relevant support within the health domain, but in general the problem has been neglected. Recent efforts however have begun to address this. The purpose of this BoF is to present an overview of a number of new projects and activities intended to support and enable increased use of sensitive data in the Australian research community. Projects and activities to be presented include CADRE (Australian Data Archive), Sensitive Data Support Proof of Concept (AARNet) and the forthcoming Commonwealth Data Access and Transparency Bill.
The BoF will then open up discussion to consider establishment of a national framework for sensitive data support and future support requirements.
Steve is the Director of the Australian Data Archive at the Australian National University.