Medicine & Health Centre for Big Data Research in Health

Data governance and ethics

Calculator and pen on table

Using big data ethically

At the Centre for Big Data Research in Health (CBDRH), it is essential to use health and medical big data in ways that comply with relevant law, regulation and policy. We respect the interests of individuals and the public and deliver trustworthy outcomes.

Our relevant capabilities include:

  • high-level understanding of Australian legal and ethical frameworks for collection use and disclosure of health and medical big data
  • unparalleled experience in navigating governance and ethics processes for state and territory and national health datasets, including linked administrative data and electronic medical records
  • experience in governing and operating secure cloud-based data analysis facilities.

Project: E-Research Institutional Cloud Architecture (ERICA): secure cloud computing for sensitive microdata – ARDC

The E-Research Institutional Cloud Architecture (ERICA) platform provides a secure, customisable, cloud-based computing environment for researchers using sensitive data. 

ERICA is an orchestration framework (infrastructure as code). It offers significant advantages over secure data enclave models that use fixed computing infrastructure. It leverages the rich services and scalability of a premier commercial cloud provider (AWS), permitting researchers to use a wide range of operating system and workspace configurations, including customised, current-generation high performance and high-throughput computing resources.

The ERICA platform boosts international collaboration by allowing shared access to data resources by collaborating researchers located in other countries while still supporting the on-shore-only data sovereignty requirements of Australian data custodians.

Major project goals

  1. Expand the national ERICA network.
  2. Implement the well-proven ERICA code base within a broader array of Australian research organisations.
  3. Map to Nectar Cloud.
  4. Assessment of interoperability between ERICA components and Nectar infrastructure, and the scoping of any development work required for implementation.
  5. Improve platform efficiency and sustainability.
  6. Modifying components of the ERICA platform to increase automation, reduce operational costs, and improve disaster recovery capability.
  7. Improved data governance.
  8. Developing ‘Five Safes-enabled’ project governance pipelines, policies and procedures for the national and international context.
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Project: Coordinated Access for Data, Researchers and Environments (CADRE) - A Five Safes Implementation Framework for Sensitive Data in HASS

The Coordinated Access for Data, Researchers and Environments (CADRE) project establishes a shared and distributed sensitive data access management platform for the social sciences and related disciplines.

The CADRE project aims to develop the integrated infrastructure required to implement the 5 Safes Framework within Australian research institutions and collaborating government and private sector agencies.

This new framework is being adapted for use by the Office of the National Data Commissioner, which is developing new legislative and data governance frameworks designed to reduce barriers to access to data held by government while maintaining public trust that sensitive data is only being released and used appropriately. A central and critical element of this will be the 5 Safes Framework, which will provide a basis for the release of government data.

The new CADRE platform will enable data owners and users to address the core concerns around governance, creation, management and sharing of sensitive data for research. As a result, Australia’s research sector will have improved access to the data needed to develop solutions to a wide range of public problems.

Project: Join us

Health and medical research in Australia significantly improve the health of the population. But a major research challenge remaining is the timely identification of eligible research participants.

The development of the Join Us register—Australia’s first disease agnostic research participant register—is a response to current health emergencies such as the COVID-19 pandemic. It also delivers longterm benefits for medical research and health outcomes. This is achieved through an online consent registration process and reaching out to participants about relevant opportunities to participate in health and medical research.

The register is open to all Australian adults. As part of registration, participants are asked to provide informed consent to be contacted for future research. They complete a brief questionnaire consisting of a few items about sociodemographic characteristics and health conditions or diagnoses. The participants are also invited to provide consent for linkages and extraction of their health records from databases managed by relevant government agencies and other care providers.

All research studies seeking support through the Join Us register for participant recruitment are required to have approval from a relevant human research ethics committee before using the register. The Join Us register will then forward research invitations to participants with the characteristics matching the study inclusion and exclusion criteria.

In the first year of operation, more than fifty research, health and non-government and consumer organisations joined the Register as Partners. The register assisted about 20 clinical trials with their recruitment. Further leveraging on the routinely collected data of the Join Us register will become a versatile resource for supporting diverse health research in Australia—strengthening Australia’s research capacity, productivity and sustainability.