Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.
Family Voices, Baltimore, Maryland.
Pediatrics. 2024 Jan 1;153(Suppl 1). doi: 10.1542/peds.2023-063424C.
The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN) was designed with a foundational commitment to partnership with family leaders to codesign and improve systems of care and supports for CMC and their families - this fundamental commitment was essential to the CMC CoIIN's measurement strategy. In this paper, we examine key learnings from partnering with family leaders from interdisciplinary state teams in the CMC CoIIN to identify and define quantitative quality improvement measures to improve care and support for CMC and their families, including quality of life, well-being, and flourishing; unmet health needs; and support systems such as medical home, patient and family engagement, and shared plans of care. Codesigning the CMC CoIIN measurement strategy with family leaders greatly enhanced our measurement approach and provided numerous unique learning opportunities for the CMC CoIIN's project team and state teams.
协作式改善和创新网络以推进儿童医疗复杂性照护（CMC CoIIN）的设计基于与家庭领袖合作的基础承诺，共同设计和改善儿童医疗复杂性患儿及其家庭的照护和支持系统 - 这种基本承诺对于 CMC CoIIN 的衡量策略至关重要。在本文中，我们将探讨与 CMC CoIIN 跨学科州团队的家庭领袖合作的重要经验，以确定和定义改善儿童医疗复杂性患儿及其家庭照护和支持的量化质量改进措施，包括生活质量、幸福感和繁荣度；未满足的健康需求；以及医疗之家、患者和家庭参与以及共同照护计划等支持系统。与家庭领袖共同设计 CMC CoIIN 的衡量策略极大地增强了我们的衡量方法，并为 CMC CoIIN 的项目团队和州团队提供了许多独特的学习机会。
