Department of Pediatrics, Monroe Carell Jr Children's Hospital at Vanderbilt, Nashville, Tennessee.
Division of Developmental and Behavioral Pediatrics, Nationwide Children's Hospital, Columbus, Ohio.
Pediatrics. 2020 Apr;145(Suppl 1):S30-S34. doi: 10.1542/peds.2019-1895F.
Family involvement in the Autism Intervention Research Network on Physical Health, the Autism Treatment Network, and the Autism Learning Health Network, jointly the Autism Networks, has evolved and grown into a meaningful and robust collaboration between families, providers, and researchers. Family involvement at the center of the networks includes both local and national network-wide coproduction and contribution. Family involvement includes actively co-authoring research proposals for large grants, equal membership of network committees and workgroups, and formulating quality improvement pathways for local recruitment efforts and other network initiatives. Although families are involved in every aspect of network activity, families have been the driving force of specifically challenging the networks to concentrate research, education, and dissemination efforts around 3 pillar initiatives of addressing comorbidities of anxiety, attention-deficit/hyperactivity disorder, and irritability in autism during the networks' upcoming funding cycle. The expansion of the networks' Extension for Community Healthcare Outcomes program is an exciting network initiative that brings best practices in autism care to community providers. As equal hub members of each Extension for Community Healthcare Outcomes team, families ensure that participants are intimately cognizant of family perspectives and goals. Self-advocacy involvement in the networks is emerging, with plans for each site to have self-advocacy representation by the spring of 2020 and ultimately forming their own coproduction committee. The Autism Treatment Network, the Autism Intervention Research Network on Physical Health, and the Autism Learning Health Network continue to be trailblazing organizations in how families are involved in the growth of their networks, production of meaningful research, and dissemination of information to providers and families regarding emerging work in autism spectrum disorders.
家庭参与自闭症干预研究网络、自闭症治疗网络和自闭症学习健康网络（统称自闭症网络）的工作不断发展壮大，成为家庭、提供者和研究人员之间有意义且强大的合作关系。网络以家庭为中心的参与包括本地和全国范围内的网络共同创作和贡献。家庭参与包括积极共同撰写大型资助项目的研究提案、平等参与网络委员会和工作组，以及制定当地招募工作和其他网络计划的质量改进途径。尽管家庭参与网络活动的各个方面，但家庭一直是推动网络集中研究、教育和传播努力的主要力量，重点关注自闭症共病的三个支柱倡议，包括焦虑、注意力缺陷/多动障碍和易怒。网络即将到来的资助周期。网络扩展的社区医疗保健成果计划是一项令人兴奋的网络计划，它将自闭症护理的最佳实践带给社区提供者。作为每个社区医疗保健成果扩展团队的平等中心成员，家庭确保参与者密切了解家庭的观点和目标。网络中的自我倡导参与正在出现，计划每个站点到 2020 年春季都有自我倡导代表，并最终形成自己的共同创作委员会。自闭症治疗网络、自闭症干预研究网络和自闭症学习健康网络继续成为在家庭参与网络发展、有意义的研究成果以及向提供者和家庭传播有关自闭症谱系障碍新兴工作的信息方面的开创性组织。
