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 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 2023-11-18

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)

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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)

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funding

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NHMRC 2000001, Australian Genomics Grant Program

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Funding for salaries in support of initiative: 1x Involve Australia Coordinator (3 years), 1x Project Officer support (3 years)

time

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2.75 years

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Involve Australia Coordinator (0.4FTE)

time

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3 years

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Involve Australia Project Officer (0.8FTE)

time

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3 years

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Working group contributor, Managing Director of Australian Genomics

time

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3 years

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Working group contributors x7, 60 hours total (~20 hours per year)

Outputs and impacts

publication/report/document

Landscape analysis/scoping review

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Report detailing the current landscape of consumer involvement in Australian genomic research

publication/report/document

Guidelines for consumer involvement in genomic research

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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

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learning item

Consumer involvement learning and development interventions for genomic researchers

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Learning and development interventions for genomic researchers to improve effective and ethical health consumer involvement

publication/report/document

Evaluation report

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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)

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Impact: Multiple responses received about the guidelines, responses improved quality of guidelines including terminology used

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