Better Indigenous Genetic (BIG) health services
Prof. Margaret Kelaher
Back Row: Yarlalu Thomas1, Alicia Bauskis1, Donna Boag2, Callum McEwan3
Middle Row: Julie McGaughran4, Belinda Davis5, Christine Jeffries-Stokes2, Helene Lange5, Rebekah McWhirter6, Margaret Kelaher3
Front row: Philippa Dalach3, Annette Stokes2, Louise Brown2, Bev Marcusson2,5
- Office of Population Genomic Health, Department of Health WA
- BIG Health Services End User Group
- Centre for Health Policy, Melbourne School of Population and Global Health
- Queensland Genetic Services
- Big Health Services local interviewer
- Centre for Law and Genetics, University of Tasmania
There is evidence of significant unmet need for clinical genetics and genetic counselling in Aboriginal and Torres Strait Islander populations. There is also evidence that where services do exist, considerable gaps persist in the provision of these services and the continuity of care. With an increasing trend of integrating genomics into clinical practice, addressing these issues is crucial to improving provision of effective genetic health care services to Indigenous Australians.
In this project we assess the quality, acceptability and effectiveness of four different models of genetic health service provision, gaining insights about best practice and feasibility in each. The models are current practise in delivery of genetic health services in the Northern Territory, Western Australia and Queensland. Based on the assessment findings, we will develop, implement and evaluate interventions, focusing in particular on needs required for effective service provision to Indigenous Australians. The interventions will prioritize capacity building, including training for Indigenous health workers, through a series of workshops to support sustainable implementation of the project outcomes.
Clinical genetic service providers in each region were involved in initiating the project and are involved in each phase of the project, from development through to data collection. Their commitment to improving genetic services will ensure that the results of the project will translate into improved patient care. Methodology during the assessment phase will include patient journey mapping, health service quality measures and genetic literacy measures. These data will be complemented with clinical audits, service provider interviews and policy analysis to identify critical enablers and barriers to culturally safe care. The findings will be used to inform genetic health service improvements that will be implemented by the service providers and are likely to have important implications for the management of other complex conditions in Indigenous Australian populations.