0202107010000
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Guidelines for Community Involvement in Genomic Research Description: Involve Australia investigated the current public and health public, community and consumer involvement landscape in Australian healthcare research to co-develop guidelines specifically for genomic research. Unlike pre-existing guidelines, Involve Australia built its guidelines from the community perspective. Ensuring patient and carer needs are built into genomic researchers’ involvement strategies the projects began provided a standard other fields of healthcare research should also meet. The project surveyed the Australian public on their perceptions of health research, interviewed community members, researchers, community involvement program coordinators and institute leads, and reviewed existing community involvement guidelines in 2022 and 2023.
STARDIT ID:
STARDIT ID:
0202107010000
Dates
State completed
Start 2021-07-01
End 2024-10-01
Form updated 2026-02-25
Location
Australia
Aims
To produce a set of health public involvement guidelines and resources for genomic research, prioritising the public perspective
To conduct a landscape analysis/scoping review of current public involvement resources in Australia and house these online for wider distribution.
Conduct learning and development interventions to ensure genomic researchers learn how to effectively involve the public in their research
Keywords
health consumer
genomics
guidelines
citizen science
patient involvement
consumer involvement
public involvement
learning
education
impact
researcher
professional development
public involvement
public
Category
research
Inputs
organisation
Australian Genomics (link)
Australian Genomics has built a large, inclusive, multidisciplinary genomic network, connected to international genomic initiatives. This network is recognised as instrumental in the successful implementation of genomics into healthcare.
group of individuals
Involve Australia Working Group (10)
funding
NHMRC 2000001, Australian Genomics Grant Program
Funding for salaries in support of initiative: 1x Involve Australia Coordinator (3 years), 1x Project Officer support (3 years)
time
2.75 years
Involve Australia Coordinator (0.4FTE)
time
3 years
Involve Australia Project Officer (0.8FTE)
time
3 years
Working group contributor, Managing Director of Australian Genomics
time
3 years
Working group contributors x7, 60 hours total (~20 hours per year)
Outputs and impacts
publication/report/document
Landscape analysis/scoping review
Report detailing the current landscape of consumer involvement in Australian genomic research
publication/report/document
State: Completed
Guidelines for Community Involvement in Genomic Research (link)
A set of guidelines, adhering to NHMRC guideline standards, that aims to improve effective involvement of health consumers in genomic research.
learning item
State: Completed
learning and development interventions for genomic researchers
Learning and development interventions for genomic researchers to improve effective and ethical health consumer involvement
publication/report/document
State: Completed
Evaluation report
Details impact and improvements made to proposed guidelines for consumer involvement in genomic research when used and evaluated in current genomic research
publication/report/document
Stage: Shared for public comment and consultation
Start: 2023-04-04
Draft version of 'Guidelines For Community Involvement In Genomics Research' (link)
Start: 2023-04-04
Impact: Multiple responses received about the guidelines, responses improved quality of guidelines including terminology used
publication/report/document
State: Completed
“I just don’t know enough”: Australian perspectives on community involvement in health and medical research (link)
Impact: cited by other peer reviewed research
STARDIT report information
STARDIT report authors
Isabella Sherburn
Tiffany Boughtwood
Jack Nunn