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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.
Afiliação
  • Vidgen ME; QIMR Berghofer Medical Research Institute, Herston, QLD, Australia.
  • Cutler K; Queensland Genomics, Herston, QLD, Australia.
  • Bean J; Health Translation Queensland, Herston, QLD, Australia.
  • Bunker D; Queensland Genomics Community Advisory Group, Brisbane, QLD, Australia.
  • Fowles LF; Queensland Genomics, Herston, QLD, Australia.
  • Healy L; Health Translation Queensland, Herston, QLD, Australia.
  • Hondow G; Queensland Genomics Community Advisory Group, Brisbane, QLD, Australia.
  • Istiko SN; Queensland Genomics Community Advisory Group, Brisbane, QLD, Australia.
  • McInerney-Leo AM; Genetic Health Queensland, Royal Brisbane and Women's Hospital, Herston, QLD, Australia.
  • Pratt G; Queensland Genomics Community Advisory Group, Brisbane, QLD, Australia.
  • Robins D; Queensland Genomics Community Advisory Group, Brisbane, QLD, Australia.
  • Waddell N; Queensland Genomics Community Advisory Group, Brisbane, QLD, Australia.
  • Evans E; Queensland Genomics Community Advisory Group, Brisbane, QLD, Australia.
Front Genet ; 13: 892475, 2022.
Article em En | MEDLINE | ID: mdl-35938017
ABSTRACT
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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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Tipo de estudo: Sysrev_observational_studies Aspecto: Implementation_research Idioma: En Revista: Front Genet Ano de publicação: 2022 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Tipo de estudo: Sysrev_observational_studies Aspecto: Implementation_research Idioma: En Revista: Front Genet Ano de publicação: 2022 Tipo de documento: Article