Wale Janet L, Di Pietro Louisa, Renton Heather, Sahhar Margaret, Walker Christine, Williams Pamela, Meehan Karen, Lynch Elly, Martyn Melissa, Bell Jane, Winship Ingrid, Gaff Clara L
, Brunswick, Australia.
Genetic Support Network of Victoria, 50 Flemington Road, Parkville, VIC, 3052, Australia.
Res Involv Engagem. 2021 Nov 27;7(1):84. doi: 10.1186/s40900-021-00326-6.
The Melbourne Genomics Health Alliance (the Alliance) is a collaboration of leading hospitals, research and academic organisations, supported by its member organisations and the Victorian Government. The Alliance was set up by its members in 2013 to steer the translation of genomics, making it an integral part of health care in Victoria, Australia. The Community Advisory Group (CAG) was formed soon after, to give input and advice across the program. This was to ensure consideration of community values, perspectives and priorities, and knowledge translation for patient care. The CAG was charged with providing a strong community voice for the duration of the program. Appointed members were experienced consumer advocates with developed connections to the community.
The Alliance progressed from an initial Demonstration Project (2013-2015) to a multifaceted program (2016-2020). The CAG worked strategically to help address complex issues, for example, communication, privacy, informed consent, ethics, patient experience, measurement and evaluation standards and policies, data storage and re-use of genomic data. Many aspects of translating genomics into routine care have been tackled, such as communicating with patients invited to have genomic testing, or their caregivers, and obtaining informed consent, clinical questions across 16 areas of health care, training and education of health and laboratory professionals, genomic data management and data-sharing. Evidence generated around clinical utility and cost-effectiveness led to government funding of testing for complex genetic conditions in children.
The CAG activities, recorded in a CAG-inspired Activity register, span the full spectrum of information sharing and consultation to co-design and partnership. The CAG were involved at multiple levels of participation and in all tiers of activity including governance, development of policies and procedures, program planning and evaluation. Working relationships were built up and a level of trust instilled to advance the Alliance work program in ensuring an effective patient-care model of delivery of genomics. CAG input into project deliverables has been tangible. Less tangible contributions included presentations at external meetings and conferences, direct interactions at meetings with Alliance members, interactions with visitors and external experts, taking part in consultations with experts, state and federal government.
墨尔本基因组学健康联盟（以下简称“联盟”）是由顶尖医院、研究及学术机构合作组成，得到其成员组织和维多利亚州政府的支持。该联盟于2013年由其成员设立，旨在推动基因组学的转化应用，使其成为澳大利亚维多利亚州医疗保健的一个组成部分。社区咨询小组（CAG）随后很快成立，为整个项目提供意见和建议。这样做是为了确保考虑社区价值观、观点和优先事项，并将知识转化应用于患者护理。CAG负责在项目期间代表社区发出强有力的声音。被任命的成员都是经验丰富的消费者权益倡导者，与社区有着广泛联系。
联盟从最初的示范项目（2013 - 2015年）发展到一个多方面的项目（2016 - 2020年）。CAG开展了具有战略意义的工作，以帮助解决复杂问题，例如沟通、隐私、知情同意、伦理、患者体验、测量与评估标准及政策、基因组数据的存储和再利用。基因组学转化为常规护理的许多方面都已得到解决，比如与受邀进行基因组检测的患者或其护理人员进行沟通、获得知情同意、涵盖16个医疗保健领域的临床问题、对医疗和实验室专业人员的培训与教育、基因组数据管理和数据共享。围绕临床效用和成本效益产生的证据促使政府为儿童复杂遗传疾病检测提供资金。
CAG的活动记录在一份受CAG启发的活动登记册中，涵盖了从信息共享与咨询到共同设计和建立伙伴关系的各个方面。CAG参与了多个层面的活动，涉及活动的所有层级，包括治理、政策和程序的制定、项目规划和评估。建立了工作关系并灌输了一定程度的信任，以推进联盟的工作计划，确保建立有效的基因组学患者护理模式。CAG对项目可交付成果的投入是实实在在的。不太明显的贡献包括在外部会议和研讨会上的发言、在会议上与联盟成员的直接互动、与访客和外部专家的互动、参与与专家、州和联邦政府的磋商。
