Dr Kristan Kang1
1Australian Research Data Commons, ,
Sharing health data is essential for translational research as evidenced by international collaborative efforts during the COVID-19 pandemic. However it is not a standard practice for health researchers and lags behind other research domains, especially relative to the level of investment into health and medical research. Commonly cited causes include: complexities of sensitive data governance; lack of community-agreed standards and practices; systems to support data sharing; and cultural and policy gaps that impede data sharing. Efforts to address these issues often struggle to scale to the broader research community.
In response, the Health Studies Australian National Data Asset (HeSANDA) program was initiated by ARDC to work collaboratively with the health research community to co-design solutions to the challenges of data management, digital infrastructure capability, culture and policy change. HeSANDA has established a community of peak national bodies, research institutions and networks, policy makers and funders, and health consumers to work collaboratively using a phased approach of consultation, design, and development to incrementally address these challenges.
Using this framework, the program initially addressed the challenges of clinical trials data discovery and accessibility, and is partnering with a network of 72 Australian research organisations to develop a nationally federated data catalogue and request platform. The next stages will integrate secure access technology into the infrastructure, and broaden coverage beyond clinical trials data.
In this presentation you will hear about the challenges, successes, and lessons from HeSANDA’s approach and how you can leverage the work of this exciting health research infrastructure initiative.
Biography:
A health researcher with extensive research and data management experience. Kristan provides strategic and management expertise for ARDC’s health and medical infrastructure development activities. [http://orcid.org/0000-0002-2057-1033]