Achieving Equity in Genomic Health (AEGH) for Indigenous Australians
Project Details
The aim of the Achieving Equity in Genomic Health (AEGH) for Indigenous Australians project is to increase equity by improving the ability of genetic services in NT, Queensland and WA to meet the needs of Indigenous patients and families. AEGH aims to do this by implementing and refining recommendations made by the Better Indigenous Genetics (BIG) Health Services Project which previously explored equity in access to genetic services in the three jurisdictions. The strategies to improve equity in clinical genetic services are; 1. Increasing awareness of genomic health services for community and primary care services, 2. Protocols to support culturally safe care, 3. Addressing logistical barriers to care, and 4. Increased transparency around processes involving diagnosis, reference data, management of biological material and protocols for their return.
Study Design
The AEGH project includes three mainstream CGS who provide services across the NT, QLD and WA. Victoria genetic services are added as an additional set of sites.
The study involves mixed methods. The project has 4 phases in the methods.
- Phase 1: Involves co-design with health service providers, end users and the research team to develop and refine a protocol to improve equity through culturally safe and appropriate care for Indigenous patients.
- Phase 2: Implementation of protocol through training with clinical genetic services staff, monitoring and providing support to CGS staff and through resource development and rollout. This phase also includes data collection methods such as administrative data, surveys, interviews with healthcare providers and end users.
- Phase 3: Evaluation and dissemination of earlier mentioned data sets.
- Phase 4: Policy analysis which comprises a desk top review of genomic policies and analysis of interviews with policy makers.
Researchers
- Dr Angeline Ferdinand (Project Lead)
- Dr Prabhathi Basnayake
- Tala Mitchell
- Nadine Philips
Collaborators
- Genetic Health WA
- Genetic Services Queensland
- Northern Territory Genetic Services
- Machado-Joseph Disease Foundation
Funding
MRFF and Melbourne Genomic Health Alliance
