STARDIT/Involve Australia Prospective Report 2021-2023
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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 healthcare research should also meet. Ultimately, this will improve consumer health outcomes and their journey towards better health.
Dates
State ongoing
Start 2021-07-26
Form updated 2024-10-02
Report authors
Isabella Sherburn
Tiffany Boughtwood
Jack Nunn
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
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
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
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
N/A