Therapeutic Development: Aggregate Data Access
The challenge:
This project aims to investigate the establishment of a service providing linked aggregate data to overcome barriers in clinical trial planning in Australia.
Clinical trials planning in Australia faces significant barriers due to uncertainty around the timelines and costs associated with accessing linked person-level data. These uncertainties often render the use of linked data unfeasible for researchers in the sector, hindering their ability to make informed decisions during feasibility assessments and trial planning.
Aggregate data products present a promising solution to this challenge. With fewer privacy risks compared to person-level data, these products are likely to require fewer governance processes, enabling more streamlined access.
Providing the therapeutic development sector with predictable and timely linked aggregate data will gain valuable insights for planning cost-effective and feasible clinical trials without compromising privacy or security.
This project seeks to address this gap by investigating the preconditions for establishing a service to provide linked aggregate data, identifying relevant governance issues, and delivering a scalable service blueprint. By reducing access barriers and meeting the needs of the sector, this initiative has the potential to transform how linked data supports clinical trial planning in Australia.

The approach:
Phase 1: Development of a service blueprint and skinned wireframing for an aggregate data product.
Phase 2: Pilot a prototype of an aggregate data service request.
Our collaborators:
- Population Health Research Network (PHRN) (Project Lead)
- Centre for Health Record Linkage (CHeReL)
- Australian Institute of Health and Welfare (AIHW)
- Data Linkage Queensland
Status:
Complete