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
Combining: Recent developments in platforms and services for sensitive data access in 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.
With: The Sensitive Data Access Community of Practice – recent activities and future directions
The Sensitive Data Community of Practice (CoP) was established in 2018, following on from the 2018 eResearch conference BoF “Sensitive Data – How do you do yours?” (https://conference.eresearch.edu.au/2018/08/sensitive-data-how-do-you-do-yours/). In the two years since it’s establishment, the CoP has built a growing community of eResearch practitioners with a common interest in sharing approaches, practices and experiences in managing sensitive data. The community includes technical, governance and domain specialists across academia, government, health and medical facilities and private sector providers.
This BoF is intended to introduce the Sensitive Data CoP to the broader eResearch community. The CoP facilitators (from AARNet, ADA and ARDC) will present an introduction to the purpose and scope of the CoP. The team will review the activities of the CoP, and the breadth and coverage of the CoP membership. They will then lead a facilited discussion among participants on potential future directions for the CoP, future topics and speakers for CoP events, and interest in collaborative projects and investments to enable research using sensitive data.