0202312040033
The project investigated the public and community involvement landscape in Australian healthcare research and used existing resources to aid the development of guidelines specifically for genomic research.
Unlike many guidelines, Involve Australia built its guidelines from the community member perspective. This allowed community members to highlight what they need if they are to continue to be involved in research. Ensuring their needs are built into genomic researchers’ involvement strategies before projects begin provides a standard for other fields of healthcare research. Ultimately, this will improve patients’ journeys towards better health.State ongoing
Start 2021-07-01
End 2025-12-31
Form updated 2023-12-08
Inputs
Involve Australia Working Group (8)
Task: Scoping review: • Provided feedback on what types of data should be extracted. • Provided resources for inclusion in review. • Undertook data extraction for cross-checking purposes. • Several working group members will review
Compensation: honourarium
Impact: Original timeline stated that we would develop, evaluate and pilot the guidelines within the three-year grant. Involving community members lengthened this process, however it ensured there was a rigorous public consultation process to ensure the guidelines being developed were as useful to stakeholders as possible | Additional community member review of the community involvement guidelines allowed us to ensure that the community voice can still be heard throughout the document | Development of a remuneration policy, which we didn’t originally plan to do. After discussions with the working group and research into the scoping review, it was noted how important offering payment to community members is. A policy was developed and made available online for us by Australian Genomics and Australian Genomics-supported projects.
Project funding
NHMRC GNT2000001, Australian Genomics Grant Program
3 years
Involve Australia Project Coordinator
3 years
Involve Australia Project Officer
AUD $6000
Consumer payment (mid-2022 to 2023)
3 hours per quarter hours
Administrative tasks associated with consumer payments
Outputs and impacts
Community Involvement Guidelines for Genomic Researchers
Impact: Guidelines will be piloted and evaluated 2024-2025.
This is a set of 17 recommendations divided into five overarching domains that describe key elements of good community involvement practice.
Australian Genomics Consumer Honoraria and Reimbursement Policy
Impact: This policy is being used across several Australian Genomics priority projects and being used/adapted by partner projects.
This was developed to ensure Australian Genomics and its supported projects are provided with the appropriate guidance for community member payment.
Impact: Guidelines endorsed by multiple organisations
A supporting document for the Guidelines for Community Involvement in Genomic Research
Impact: Feedback from the draft guidelines affected the final version of guidelines by making them more readable, useable and intuitive
Response to feedback for Involve Australia’s 'Guidelines for Community Involvement in Genomic Research'