HeSANDA Cohort Studies

The Challenge

The Health Studies Australian National Data Asset (HeSANDA) program is building national infrastructure to support researchers in sharing and reusing sensitive health data, including clinical trials, cohort studies and other data valuable for research.  The program has created Health Data Australia, a national catalogue where researchers can find, share and request access to data for health research.

Enabling researchers to access and reuse health research data means a reduction in research waste, improvements in researcher collaboration and an opportunity to answer new research questions. Requests to reuse primary research data are reviewed and agreed with the data owner and custodian, ensuring the secondary research will be of high value and meets regulatory and ethical considerations. Overall, sharing data supports more efficient and effective research to help improve health outcomes.

Since 2021, ARDC has partnered with the health research community through the HeSANDA program to form a network of nodes that support the secondary use of data from clinical trials. Nine nodes (with 72 participating partners) were established and are currently operating with continued support from ARDC. They continue to increase the uptake of Health Data Australia, the catalogue of health data created through the HeSANDA program. 

To promote data discovery and ethical sharing of health data for secondary research, ARDC and our partners are expanding the Health Data Australia catalogue to more types of health studies.

What Are Cohort Studies?

Cohort studies are a type of observational research where a group of individuals (a cohort) sharing common characteristics is followed over time to assess the relationship between specific exposures and outcomes, like diseases. By following groups of individuals over extended periods, cohort studies are invaluable for understanding the progression of diseases, the impact of lifestyle and social factors, and the long-term effects of treatments. Cohort datasets are rich with insights that can inform policy, guide clinical practice and support the development of new treatments.

However, it is not always easy for academics and clinicians to find cohort study data to include in their research. Through this project, ARDC will add cohort studies to the Health Data Australia catalogue so that Australian researchers can find and request health data for secondary research, all in one place. It will make the process of finding and sharing cohort data straightforward for both the data custodian and the requester.Until now, researchers embarking on or operating these valuable multi-decadal studies and data assets have had to work in relative isolation, with no national association or community of practice to support their work.  The project seeks to establish a network of cohort researchers to share good practice, identify common issues and responses and support the underpinning data management processes for this community.

The Response

The new HeSANDA Cohort Studies Network leverages the existing HeSANDA approach and nodes to support the secondary use of cohort data in innovative new research.

The ARDC is establishing the HeSANDA Cohort Studies Network (‘the Network’) to:

• support good practice in data capture, management and curation
• build the capacity for secondary data usage
• provide high-level data discovery and requests across a large number of research cohorts through Health Data Australia

This will be achieved through a national network of ‘nodes’, led by key research organisations, with each node supporting multiple individual cohort studies. Each node project shares the same aims and work packages, but has different partners that will form the initial national network. The common activities of all projects will be:

1. contribute to the establishment of a community of practice 
2. contribute to the design of information and functional requirements to enable health cohort studies to be included in Health Data Australia 
3. work with their partners to:
   1. establish/modify data sharing practices to enable the use of Health Data Australia
   2. implement solutions to onboard cohort studies into Health Data Australia
   3. onboard a set of nominated cohort studies to Health Data Australia
   4. undertake outreach activities with key stakeholders
4. contribute to the design and requirements of a National Cohort Explorer Platform that enables measure-level data discovery for health cohorts.

Who Will Benefit

• Researchers
• Custodians of cohort data
• Partner institutions
• Industry partners
• Research data teams and related communities of practice
• Funders
• Institutional ethics committees

Target Outcomes

Outcomes of this project will include:

• enhanced data quality and uniformity of data through standardised data collection and data management

• improved research efficiency through streamlining access and increasing research capacity
• making cohort study data findable and accessible to researchers through Health Data Australia
• increased awareness of available data for the researcher community
• improved collaboration processes across institutions, researchers and partner organisations
• advanced data sharing practices in the research community.

Key Resources

• Visit Health Data Australia.
• Read the report on the consultations for health cohort studies.