Genetic health services are playing an increasingly important role in improving human health. Aboriginal and Torres Strait Islander people are underrepresented in such services despite having higher prevalence of a number of genetically determined conditions and evidence of willingness to access these services. The project will inform the development of effective models of genetic health service provision for Indigenous people. This will improve health equity both now and in the future.
The project leadership team includes three exceptional Aboriginal researchers including Associate Professor Gail Garvey, Dr Misty Jenkins and Professor Yin Paradies. The project will be governed by a project reference group (PRG) chaired by an Aboriginal member of the research team. An end-user group will inform all phases of the research and set the agenda for the PRG. The end-user group will consist of Aboriginal and Torres Strait Islander people affected by genetic disease.
The project has excellent engagement with stakeholders, policy makers and key providers of genetic services. The project will improve the accessibility and quality of clinical genetic services for Aboriginal and Torres Strait Islander people by:
- Improving service models and developing resources to support cultural competency among genetic service providers
- Genetic literacy among Aboriginal and Torres Strait Islander people.
Phase 1: Understanding current models of care — Through key informant interviews and patient journey mapping the research team will identify the genetic service needs of Aboriginal and Torres Strait Islander people and assess the extent to which existing models to meet these needs.
Phase 2: Evaluate the performance of model of genetic service provision in the NT and WA — The research team will compare the quality and acceptability of care and follow-up between from 2009–2016 in the NT and WA. A new model of co-ordinated care was introduced in 2014 in the NT.
Phase 3: Development of training and resources — The research team will answer the following questions: What is the local genetic health services capacity? What elements are required in order to build a good/comprehensive follow-up service? What skills or training do people need? How can this be established in a sustainable way? In answering these questions, a series of training modules will be developed to support the sustainable implementation of the project outcomes.
The project will:
- Increase the accessibility of genetic services to Aboriginal and Torres Strait islander people by improving the ability of service providers to meet the patient and family needs
- Develop and trial strategies to build capacity for the provision of culturally safe and appropriate genetic health services for Aboriginal and Torres Strait islander people, and
- Identify gaps in the journey taken by Aboriginal and Torres Strait islander Australians seeking genetic health services including access to follow-up services.