Community Reference Group
A Community Reference Group has been established to sit alongside other advisory committees and oversee the strategic direction of FASD Research Australia.
Community and Consumer members will also participate in research conducted by the project teams. They will be supported by the Consumer and Community Involvement Program's resources and training at the Telethon Kids Institute.
Priority Setting Partnership Project
The aim of this project was to help focus future research on the questions that matter to people who are interested in alcohol consumption during pregnancy, people with lived experience of FASD and service providers.
The priorities were determined by:
- Conducting an online community survey to identify themes and topics of interest for future research considered important by community members who are/have been affected by FASD and service providers, specifically around two streams: a) Prevention of FASD and b) Diagnosis and treatment of FASD.
- Conducting a follow-up online community survey to rank the order of importance of the themes and topics identified from the survey results.
- Holding a one-day consensus workshop with members of the Community Reference Group and other community members to develop ten community priorities.
Although a key objective of the project was to establish a list of top ten FASD research priorities, it was clear as the consensus workshop progressed that the Aboriginal community participants had significantly different context and concerns to consider. The Project Team decided that a list of priorities for the Aboriginal community needed to be captured separately to ensure their priorities were given the appropriate consideration.