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
QIMR Berghofer Medical Research Institute, Herston, QLD, Australia.
Queensland Genomics, Herston, QLD, Australia.
Front Genet. 2022 Jul 22;13:892475. doi: 10.3389/fgene.2022.892475. eCollection 2022.
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.
在将基因组学应用于卫生服务及相关研究的过程中，需要消费者和社区参与（CCE），以确保变革能使受影响的患者受益。昆士兰基因组学项目是一个将基因组学应用于公共卫生服务的项目。我们描述了其社区咨询小组（CAG）的结构和功能，并根据CAG成员的观点提供建议。CAG以顾问身份为昆士兰基因组学项目及其项目提供建议。CAG还获得资源以开展和领导以社区为重点的活动。CAG的关键促成因素包括：CAG成员技能和经验的多样性、充足的资源以及CAG自我确定方向的能力。由于该项目的项目中缺乏实施CCE的机制，CAG遇到了一些限制。在此，我们提供对这个CAG的见解和评论，这将对其他寻求在基因组研究和医疗保健中开展CCE的举措有所帮助。
