Ferraro Kerry, Leal Jenny, Sutton Anna, Peters Susan, Pinter Corinne
JIA Parent and Pediatric Rheumatology Care and Outcomes Improvement Network Volunteer, Lower Gwynedd, PA, United States.
JIA Parent and Pediatric Rheumatology Care and Outcomes Improvement Network Volunteer, Columbus, OH, United States.
Front Pediatr. 2024 Aug 9;12:1428758. doi: 10.3389/fped.2024.1428758. eCollection 2024.
Parent members of the Pediatric Rheumatology Care & Outcomes Improvement Network are an integral part of the Learning Health Network's work. Since early in the creation of the network, they have been a part of every Quality Improvement project, committee, and work group and have a role in governance on the Executive and Steering Committees. Members of the Parent Working Group (PWG) have played a role in developing QI measures used in the clinical setting as well as initiatives and projects like the guiding work of Treat-to-Target. The PWG also creates self-management supports, including toolkits for families and patients at all stages of life. This article will discuss how integrating parents as partners in a pediatric Learning Health Network is critical for the quality of care received by children with chronic illnesses and to improving outcomes.
儿科风湿病护理与结局改善网络的家长成员是学习健康网络工作的重要组成部分。自该网络创建之初，他们就参与了每一个质量改进项目、委员会和工作组，并在执行委员会和指导委员会的治理中发挥作用。家长工作组（PWG）的成员在制定临床环境中使用的质量改进措施以及诸如达标治疗等倡议和项目方面发挥了作用。PWG还创建自我管理支持措施，包括为处于生命各个阶段的家庭和患者提供工具包。本文将讨论在儿科学习健康网络中让家长作为合作伙伴参与进来对于慢性病患儿所接受护理的质量以及改善结局为何至关重要。
