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Community input in a genomic health implementation program: Perspectives of a community advisory group

Consumer and community engagement (CCE) in the implementation of genomics into health services and associated research is needed to ensure that changes benefit the affected patients. Queensland Genomics was a program to implement genomics into a public health service. We describe its Community Advis...

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Autores principales: Vidgen, Miranda E., Cutler, Katrina, Bean, Jessica, Bunker, David, Fowles, Lindsay F., Healy, Louise, Hondow, Gary, Istiko, Satrio Nindyo, McInerney-Leo, Aideen M., Pratt, Gregory, Robins, Deborah, Waddell, Nicola, Evans, Erin
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9355292/
https://www.ncbi.nlm.nih.gov/pubmed/35938017
http://dx.doi.org/10.3389/fgene.2022.892475
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author Vidgen, Miranda E.
Cutler, Katrina
Bean, Jessica
Bunker, David
Fowles, Lindsay F.
Healy, Louise
Hondow, Gary
Istiko, Satrio Nindyo
McInerney-Leo, Aideen M.
Pratt, Gregory
Robins, Deborah
Waddell, Nicola
Evans, Erin
author_facet Vidgen, Miranda E.
Cutler, Katrina
Bean, Jessica
Bunker, David
Fowles, Lindsay F.
Healy, Louise
Hondow, Gary
Istiko, Satrio Nindyo
McInerney-Leo, Aideen M.
Pratt, Gregory
Robins, Deborah
Waddell, Nicola
Evans, Erin
author_sort Vidgen, Miranda E.
collection PubMed
description Consumer and community engagement (CCE) in the implementation of genomics into health services and associated research is needed to ensure that changes benefit the affected patients. Queensland Genomics was a program to implement genomics into a public health service. We describe its Community Advisory Group’s (CAG) structure and function and provide recommendations based on the CAG members’ perspectives. The CAG provided advice to the Queensland Genomics program and its projects in an advisory capacity. The CAG was also resourced to develop and lead community-focused activities. Key enablers for CAG included; diversity of CAG members’ skills and experience, adequate resourcing, and the CAG’s ability to self-determine their direction. The CAG experienced limitations due to a lack of mechanisms to implement CCE in the Program’s projects. Here, we provide insights and commentary on this CAG, which will be useful for other initiatives seeking to undertake CCE in genomic research and health care.
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spelling pubmed-93552922022-08-06 Community input in a genomic health implementation program: Perspectives of a community advisory group Vidgen, Miranda E. Cutler, Katrina Bean, Jessica Bunker, David Fowles, Lindsay F. Healy, Louise Hondow, Gary Istiko, Satrio Nindyo McInerney-Leo, Aideen M. Pratt, Gregory Robins, Deborah Waddell, Nicola Evans, Erin Front Genet Genetics Consumer and community engagement (CCE) in the implementation of genomics into health services and associated research is needed to ensure that changes benefit the affected patients. Queensland Genomics was a program to implement genomics into a public health service. We describe its Community Advisory Group’s (CAG) structure and function and provide recommendations based on the CAG members’ perspectives. The CAG provided advice to the Queensland Genomics program and its projects in an advisory capacity. The CAG was also resourced to develop and lead community-focused activities. Key enablers for CAG included; diversity of CAG members’ skills and experience, adequate resourcing, and the CAG’s ability to self-determine their direction. The CAG experienced limitations due to a lack of mechanisms to implement CCE in the Program’s projects. Here, we provide insights and commentary on this CAG, which will be useful for other initiatives seeking to undertake CCE in genomic research and health care. Frontiers Media S.A. 2022-07-22 /pmc/articles/PMC9355292/ /pubmed/35938017 http://dx.doi.org/10.3389/fgene.2022.892475 Text en Copyright © 2022 Vidgen, Cutler, Bean, Bunker, Fowles, Healy, Hondow, Istiko, McInerney-Leo, Pratt, Robins, Waddell and Evans. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Genetics
Vidgen, Miranda E.
Cutler, Katrina
Bean, Jessica
Bunker, David
Fowles, Lindsay F.
Healy, Louise
Hondow, Gary
Istiko, Satrio Nindyo
McInerney-Leo, Aideen M.
Pratt, Gregory
Robins, Deborah
Waddell, Nicola
Evans, Erin
Community input in a genomic health implementation program: Perspectives of a community advisory group
title Community input in a genomic health implementation program: Perspectives of a community advisory group
title_full Community input in a genomic health implementation program: Perspectives of a community advisory group
title_fullStr Community input in a genomic health implementation program: Perspectives of a community advisory group
title_full_unstemmed Community input in a genomic health implementation program: Perspectives of a community advisory group
title_short Community input in a genomic health implementation program: Perspectives of a community advisory group
title_sort community input in a genomic health implementation program: perspectives of a community advisory group
topic Genetics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9355292/
https://www.ncbi.nlm.nih.gov/pubmed/35938017
http://dx.doi.org/10.3389/fgene.2022.892475
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