0202312040033

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 2023-12-05

Report authors

Isabella Sherburn (link)
isabella.sherburn@mcri.edu.au
main report author

Keri Finlay (link)
checked report data

Location

Australia

URL

https://www.australiangenomics.org.au/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

organisation

Australian Genomics (link)

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Task: coordinated project | provided funding staff

group of individuals

Involve Australia Working Group (8)

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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

funding

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Project funding

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NHMRC GNT2000001, Australian Genomics Grant Program

time

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3 years

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Involve Australia Project Coordinator

time

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3 years

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Involve Australia Project Officer

funding

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AUD $6000

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Consumer payment (mid-2022 to 2023)

time

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3 hours per quarter hours

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Administrative tasks associated with consumer payments

Outputs and impacts

publication/report/document

Community Involvement Guidelines for Genomic Researchers

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Impact: Guidelines will be piloted and evaluated 2024-2025.

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This is a set of 17 recommendations divided into five overarching domains that describe key elements of good community involvement practice.

publication/report/document

Australian Genomics Consumer Honoraria and Reimbursement Policy

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Impact: This policy is being used across several Australian Genomics priority projects and being used/adapted by partner projects.

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This was developed to ensure Australian Genomics and its supported projects are provided with the appropriate guidance for community member payment.