Ms Kathy Dallest1, Katie Ozdowska2, Olya Ryjenko3, Dr Rhys Williams4
1QCIF Ltd, Brisbane, Australia, 2University of Melbourne, Melbourne, Australia, 3The University of Sydney, Sydney, Australia, 4Australian Research Data Commons, Caulfield East, Australia
Biography:
https://orcid.org/0000-0003-4109-3146
Kathy Dallest is the Senior Health Informatician in QCIF and is co-leader of the HeSANDA Queensland Node delivering national infrastructure enabling secondary use of health and medical research data. Kathy has a background in nursing and public health and transitioned to Health Informatics in Scotland in the mid 1990s. Over the past 9 years she has provided expert domain knowledge and guidance to eResearch infrastructure programs, research groups and health services. Kathy has over 30 years’ experience working with sensitive health and medical data in clinical, research and educational settings with a focus on patient safety, governance, information security, integrity and knowledge generation.
Abstract:
Australia’s health research community faces a pressing need to maximise the impact of valuable data generated through clinical trials and health studies. While data sharing and reuse offer significant scientific, economic, and ethical advantages, complex challenges often impede these practices in Australia.
The Health Studies Australian National Data Asset (HeSANDA) program is addressing these challenges by building national data sharing infrastructure. The program established a national network of research organisations, structured under nine HeSANDA Nodes working in collaboration with the Australian Research Data Commons (ARDC).
An important component of this national infrastructure is Health Data Australia (HDA), an online repository of health and medical research metadata contributed by the Nodes. The repository allows researchers to discover health data available for secondary use and facilitates access and sharing by connecting researchers to data owners and their institutions. This includes metadata from clinical trials, cohort studies and other types of health and medical research.
The HeSANDA network is addressing multiple components of the health research ecosystem that together facilitate sharing of health data for research. These include processes for patient consent to data sharing, ethical approval, data and metadata standards, policy development and cultural change.
By unlocking the potential of reusing existing research data, HeSANDA aims to promote research efficiency, reduce research waste, foster collaboration, and create opportunities to address new research questions.
This presentation will use real world examples of how this key infrastructure delivers benefits for researchers, research participants, the public, institutions, funders, educators and other stakeholders.