STARDIT/Involve Australia Prospective Report 2021-2023
Description: Involve Australia will investigate the current public and health consumer involvement landscape in Australian healthcare research and use resources that currently exist to develop guidelines specifically for genomic research. Unlike pre-existing guidelines, Involve Australia will build its guidelines from the health consumer perspective. Ensuring patient and carer needs are built into genomic researchers’ consumer involvement strategies before projects begin provides a standard other fields of h
Dates
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Start 2021-07-26
Form updated 2021-08-30
Report authors
Isabella Sherburn
isabella.sherburn@mcri.edu.au
isabella.sherburn@mcri.edu.au
Tiffany Boughtwood
0000-0002-9634-3731
0000-0002-9634-3731
Jack Nunn
0000-0003-0316-3254
0000-0003-0316-3254
John Cannings OAM
Monica Ferrie
Keri Finlay
keri.finlay@vcgs.org.au
keri.finlay@vcgs.org.au
Anne McKenzie AM
0000-0002-5596-8495
0000-0002-5596-8495
Sean Murray
Gregory Pratt
0000-0001-9908-773X
0000-0001-9908-773X
Fiona Russo
0000-0002-1652-2589
0000-0002-1652-2589
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
Inputs
organisation
Start: 2021-07-26
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
Start: 2021-07-26
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
Guidelines for consumer involvement in genomic research
A set of guidelines, adhering to NHMRC guideline standards, that aims to improve effective involvement of health consumers in genomic research.
other
Online repository of health consumer involvement resources
learning item
Consumer involvement 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
Evaluation report
Details impact and improvements made to proposed guidelines for consumer involvement in genomic research when used and evaluated in current genomic research