Genetic Health Pathways

Improving access to Genetic Health Services for
Aboriginal and Torres Strait Islander Queenslanders’

BACKGROUND

Genomic research is helping to identify the causes of diseases, to estimate a person’s risk of disease and to suggest ways to tailor a patient’s treatment and management. This research has the potential to revolutionise healthcare. It is expected that the integration of genomics into healthcare may result in major gains in survival and quality of life.

Currently, the number of Aboriginal and Torres Strait Islander Queenslanders accessing genetic health services is under-represented compared to the whole of population access. With a growing emphasis on the implementation of genomics into healthcare, there is potential that inaction to ensure coordinated care across the primary and specialist service sector will contribute to widening the gap in healthcare access and consequently, health outcomes.

Novel solutions are necessary to support and ensure coordinated care across existing and evolving health services; to ensure quality, equitable and accessible genetic health care services for all Queenslanders.

PREVIOUS PROJECTS

This Project (Genetic Health Pathways) will build on the work of the Queensland Genomics funded projects:

  • GenetiQs served to confirm the views of Indigenous Queenslanders with respect to interest and preferences for community involvement in genomic research through the development of the research guidelines document: Genomics Partnerships: Guidelines for genomic research with Aboriginal and Torres Strait Islander peoples of Queensland.
  • IG-HeLP responded to the need to develop and disseminate Aboriginal and Torres Strait Islander genomic health literacy resources that describe the patient journey, referral, access and benefits and risks associated with genetic testing and counselling.

GENETIC HEALTH PATHWAYS IN A NUTSHELL

QIMR Berghofer in collaboration with QAIHC (Queensland Aboriginal and Islander Health Council) and GHQ (Genetic Health Queensland) will facilitate a series of interviews and workshops with ATSICCHOs representatives and community members, as well as patients who have currently being referred to GHQ.

Workshops will be co-facilitated to consult with expert working groups to identify barriers, access, costs, awareness, workforce structures and enablers. Themes, recommendations and discussions arising from workshops/focus groups will be reflected and captured to propose an integrated model for Aboriginal and Torres Strait Islander Queenslanders. The information collected from the workshops will then be used to inform the design of a referral pathway for patients into GHQ.

EXPECTED OUTCOMES

This project will aim to:

  • Embed genomic health expertise in the Queensland Aboriginal and Islander Health Council (QAIHC)
  • Explore service utilisation and workforce needs and preferences of the Aboriginal and Torres Strait Islander Community Controlled Health Organisations (ATSICCHOs) of Queensland.
  • Develop a preferred referral pathway to ensure a culturally safe and appropriate, patient and family centred healthcare experience for Aboriginal and Torres Strait Islander patients referred to Genetics Health Queensland (GHQ) from primary care.

PROJECT TEAM

The Project will work with a range of stakeholders and partners to develop and produce a preferred integrated health care model. The project steering committee members represent the following organisations:

  • QIMR Berghofer medical Research Institute
  • Queensland Aboriginal and Islander Health Council (QAIHC)
  • Genetic Health Queensland (GHQ)

PROJECT TEAM

Mr Gregory Pratt, Manager of Aboriginal and Torres Strait Islander Research

Ms Victoria Donoghue, Project Officer

CONTACT

If you have any queries or need more information on the project, please contact the Project Officer, Ms Victoria Donoghue on the details below:

Ms Victoria Donoghue

Victoria.Donoghue@qimrberghofer.edu.au

(07) 3362 0104