Involve Australia Community Involvement Guidelines Development and Pilot
Description: Involve Australia has engaged with the public to develop community involvement guidelines for genomic researchers. The project partnered with patient support and advocacy groups, patients and carers, people who involve community in their research, interested members of the public, genomic researchers and healthcare professionals.
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.
Dates
State ongoing
Start 2021-07-01
End 2025-12-31
Form updated 2023-12-04
Location
Australia
URL
template:str right/projects/involve-australia-public-involvement-in-genomic-research/
Aims
To develop a set of community involvement guidelines for genomic researchers, prioritising the voice of community members.
To pilot and evaluate the community involvement guidelines to ensure they are implementable and fit for purpose.
Keywords
health consumer
community member
genomics
guidelines
citizen science
patient involvement
public involvement
consumer involvement
community involvement
research
health research
genomic research
learning
education
impact
researcher
professional development
Category
research
Inputs
group of individuals
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: volunteer