STARDIT/Involve Australia Prospective Report 2021-2023: Difference between revisions

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{{item
{{item
|type_parameter=research
|description_parameter=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.
|description_parameter=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.
|aim_parameter={{aim parameter|To produce a set of health public involvement guidelines and resources for genomic research, prioritising the public perspective}}{{aim parameter|To conduct a landscape analysis/scoping review of current public involvement resources in Australia and house these online for wider distribution.}}{{aim parameter|Conduct learning and development interventions to ensure genomic researchers learn how to effectively involve the public in their research}}
|aim_parameter={{aim parameter|To produce a set of health public involvement guidelines and resources for genomic research, prioritising the public perspective}}{{aim parameter|To conduct a landscape analysis/scoping review of current public involvement resources in Australia and house these online for wider distribution.}}{{aim parameter|Conduct learning and development interventions to ensure genomic researchers learn how to effectively involve the public in their research}}
|keyword_parameter={{keyword parameter|health consumer}}{{keyword parameter|genomics}}{{keyword parameter|guidelines}}{{keyword parameter|citizen science}}{{keyword parameter|patient involvement}}{{keyword parameter|consumer involvement}}{{keyword parameter|public involvement}}{{keyword parameter|learning}}{{keyword parameter|education}}{{keyword parameter|impact}}{{keyword parameter|researcher}}{{keyword parameter|professional development}}
|keyword_parameter={{keyword parameter|health consumer}}{{keyword parameter|genomics}}{{keyword parameter|guidelines}}{{keyword parameter|citizen science}}{{keyword parameter|patient involvement}}{{keyword parameter|consumer involvement}}{{keyword parameter|public involvement}}{{keyword parameter|learning}}{{keyword parameter|education}}{{keyword parameter|impact}}{{keyword parameter|researcher}}{{keyword parameter|professional development}}
|state_parameter=ongoing
|start_date_parameter=2021-07-26
|start_date_parameter=2021-07-26
|ongoing=ongoing
|location_parameter=Australia
|location_parameter=Australia
|location_link=No
|author_parameter={{author parameter
|author_parameter={{author parameter
|aut_nam=Isabella Sherburn
|aut_nam=Isabella Sherburn
|aut_con=contact
|aut_con=non contact
|aut_eml=isabella.sherburn@mcri.edu.au
}}{{author parameter
}}{{author parameter
|aut_nam=Tiffany Boughtwood
|aut_nam=Tiffany Boughtwood
|aut_ids=0000-0002-9634-3731
|aut_con=non contact
|aut_con=non contact
}}{{author parameter
}}{{author parameter
|aut_nam=Jack Nunn
|aut_nam=Jack Nunn
|aut_ids=0000-0003-0316-3254
|aut_con=non contact
}}{{author parameter
|aut_nam=John Cannings OAM
|aut_con=non contact
}}{{author parameter
|aut_nam=Monica Ferrie
|aut_con=non contact
}}{{author parameter
|aut_nam=Keri Finlay
|aut_con=contact
|aut_eml=keri.finlay@vcgs.org.au
}}{{author parameter
|aut_nam=Anne McKenzie AM
|aut_ids=0000-0002-5596-8495
|aut_con=non contact
}}{{author parameter
|aut_nam=Sean Murray
|aut_con=non contact
}}{{author parameter
|aut_nam=Gregory Pratt
|aut_ids=0000-0001-9908-773X
|aut_con=non contact
}}{{author parameter
|aut_nam=Fiona Russo
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}}
}}
Line 47: Line 21:
|con_typ=organisation
|con_typ=organisation
|con_nam=Australian Genomics
|con_nam=Australian Genomics
|con_rol=Providing funding and staff
|con_url=https://www.australiangenomics.org.au/
|con_url=https://www.australiangenomics.org.au/
|con_sta=2021-07-26
|con_dates=No
|con_des=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.
|con_des=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.
}}{{contributor parameter
}}{{contributor parameter
Line 55: Line 28:
|con_grp=Involve Australia Working Group
|con_grp=Involve Australia Working Group
|con_num=10
|con_num=10
|con_rol=Progress activities for Involve Australia and provide expert input
|con_dates=No
|con_sta=2021-07-26
}}
}}
|input_parameter={{input parameter
|input_parameter={{input parameter
Line 86: Line 58:
|out_typ=publication/report/document
|out_typ=publication/report/document
|out_out=Landscape analysis/scoping review
|out_out=Landscape analysis/scoping review
|out_dates=No
|out_typ3=No
|fair=No
|secure=No
|care=No
|out_des=Report detailing the current landscape of consumer involvement in Australian genomic research
|out_des=Report detailing the current landscape of consumer involvement in Australian genomic research
}}{{output parameter
}}{{output parameter
|out_typ=publication/report/document
|out_typ=publication/report/document
|out_out=Guidelines for consumer involvement in genomic research
|out_out=Guidelines for consumer involvement in genomic research
|out_dates=No
|out_typ3=No
|fair=No
|secure=No
|care=No
|out_des=A set of guidelines, adhering to NHMRC guideline standards, that aims to improve effective involvement of health consumers in genomic research.
|out_des=A set of guidelines, adhering to NHMRC guideline standards, that aims to improve effective involvement of health consumers in genomic research.
}}{{output parameter
}}{{output parameter
|out_typ=other
|out_typ=other
|out_out=Online repository of health consumer involvement resources
|out_out=Online repository of health consumer involvement resources
|out_dates=No
|out_typ3=No
|fair=No
|secure=No
|care=No
}}{{output parameter
}}{{output parameter
|out_typ=learning item
|out_typ=learning item
|out_out=Consumer involvement learning and development interventions  for genomic researchers
|out_out=Consumer involvement learning and development interventions  for genomic researchers
|out_dates=No
|out_typ3=No
|fair=No
|secure=No
|care=No
|out_des=Learning and development interventions for genomic researchers to improve effective and ethical health consumer involvement
|out_des=Learning and development interventions for genomic researchers to improve effective and ethical health consumer involvement
}}{{output parameter
}}{{output parameter
|out_typ=publication/report/document
|out_typ=publication/report/document
|out_out=Evaluation report
|out_out=Evaluation report
|out_dates=No
|out_typ3=No
|fair=No
|secure=No
|care=No
|out_des=Details impact and improvements made to proposed guidelines for consumer involvement in genomic research when used and evaluated in current genomic research
|out_des=Details impact and improvements made to proposed guidelines for consumer involvement in genomic research when used and evaluated in current genomic research
}}
|output_parameter={{output parameter
|out_typ=publication/report/document
|out_out=Landscape analysis/scoping review
|out_des=Report detailing the current landscape of consumer involvement in Australian genomic research
}}{{output parameter
}}{{output parameter
|out_typ=publication/report/document
|out_typ=publication/report/document
|out_out=Guidelines for consumer involvement in genomic research
|out_out=Draft version of 'Guidelines For Community Involvement In Genomics Research'
|out_des=A set of guidelines, adhering to NHMRC guideline standards, that aims to improve effective involvement of health consumers in genomic research.
|out_stg=Shared for public comment and consultation
}}{{output parameter
|out_dates=Yes
|out_typ=other
|out_sta=2023-04-04
|out_out=Online repository of health consumer involvement resources
|out_typ3=No
}}{{output parameter
|out_url_oth=https://web.archive.org/web/20230718053234/https://www.australiangenomics.org.au/wp-content/uploads/2021/06/Involve-Australia-Guidelines_April-2023.pdf
|out_typ=learning item
|fair=No
|out_out=Consumer involvement learning and development interventions  for genomic researchers
|secure=No
|out_des=Learning and development interventions for genomic researchers to improve effective and ethical health consumer involvement
|care=No
}}{{output parameter
|out_imp=Multiple responses received about the guidelines, responses improved quality of guidelines including terminology used
|out_typ=publication/report/document
|out_out=Evaluation report
|out_des=Details impact and improvements made to proposed guidelines for consumer involvement in genomic research when used and evaluated in current genomic research
}}
}}
|ongoing=ongoing
}}
}}
N/A

Latest revision as of 21:22, 18 November 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)


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)

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

N/A

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