Linked Data Asset for Australian Health Research Project

Purpose

The University of New South Wales engaged HealthConsult to support the development of a national Data Sharing Agreement (DSA) template aspart of the Linked Data Asset for Australian Health Research (LINDAHR)initiative. Delivered in partnership with the Australian Institute of Healthand Welfare (AIHW) and funded by the Australian Research Data Commons (ARDC),the project aimed to streamline the integration of cohort, clinical trial, andclinical registry data with enduring government datasets - enabling greater use of linked data for research and system improvement.

Approach

HealthConsult undertook a comprehensive review of existingdata sharing agreements and engaged with 37 stakeholders across the research sector, including representatives from major cohort studies, clinicalregistries, institutional legal teams, and Indigenous health researchers. The process included:

• Comparative analysis of DSA templates in use across national and jurisdictional data sharing initiatives.
• Iterative co-design of a draft DSA template based on the Office of the National Data Commissioner's agnostic template and adapted for NIHSI use.
• Targeted consultations to identify risks, enablers, and critical governance considerations for research data custodians.
• Development of supporting tools including a Frequently Asked Questions document and implementation roadmap.

Outcome

HealthConsult’s work delivered a nationally relevant, flexible DSA template to support the lawful, secure, and transparent sharing of researcher datasets with the National Integrated Health Services Information (NIHSI) asset, and future transition to the National Health Data Hub. The project produced:

• A refined, modular DSA template that aligns with best practice governance and supports streamlined access for approved researchers.
• A set of seven actionable recommendations to guide implementation, covering issues such as cost structures, consent and IP management, and stakeholder education.
• Practical tools to help researchers and data custodians navigate the evolving national data-sharing environment, including metadata standards and dynamic consent processes.

The DSA framework lays the foundation for greatercollaboration between researchers and government, improving the reusability ofnational datasets and enabling long-term tracking of health outcomes.