By Dr Jeff Christiansen, med.data.edu.au Programme Manager
Despite an increasing necessity for shared infrastructure, products and services to undertake collaborative ‘big data’ research projects, there is a perception by some researchers that utilising national collaborative IT infrastructure for human-derived health data is riskier than utilising internal institutional storage and compute.
A lack of clarity for researchers about how their ethical responsibilities as custodians of human-derived data can be fulfilled using collaborative IT infrastructures and services contributes to this situation.
To provide up-to-date relevant legislative, ethical and security information specifically to the Australian health and medical research community, the Intersect-led national NCRIS RDS-funded med.data.edu.au project has undertaken extensive research into the legislative and best practice landscape that impacts on data-driven human research in Australia. This includes: privacy legislation; protection of personal and sensitive information; best practice frameworks that should be observed when conducting human research; transborder dataflows; national IT security controls required for storing and using health-related information; how organisations such as Intersect adhere to these controls; and the responsibilities of both Data Custodians and IT infrastructure providers in undertaking work of this type.
In order to make this complex information accessible to researchers, we've built an Interactive Use Guide that directs users through a series of questions and presents specific relevant information along the way. This also helps understand how Intersect Space and Time align with legislative and best practice frameworks,
The interactive Use Guide is accessible from med.data.edu.au.