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儿科学习型健康网络在实体器官移植中的应用-让所有利益相关者参与进来,为需要移植的儿童实现健康。

Pediatric Learning Health Networks in Solid Organ Transplantation-Engaging all Stakeholders to Achieve Health for Children Who Require Transplantation.

机构信息

Emory University and Children's Healthcare of Atlanta, Atlanta, Georgia, USA.

Digestive Health Institute, Children's Hospital Colorado and the University of Colorado, Aurora, Colorado, USA.

出版信息

Pediatr Transplant. 2024 Nov;28(7):e14862. doi: 10.1111/petr.14862.

DOI:10.1111/petr.14862
Abstract

BACKGROUND

Learning Health Networks (LHN) have evolved within medicine over the past two decades, but their integration into transplantation has been more recent.

OBJECTIVES AND METHODS

In this paper, we describe three LHNs in end-stage organ disease/transplantation, their common and unique features, and how their "actor-oriented" architecture allowed for rapid adaptation to meet the needs of their patients and practitioners during the recent COVID-19 pandemic.

RESULT

The structure and focus of the Improving Renal Outcomes Collaborative (IROC), Starzl Network for Excellence in Pediatric Transplantation (SNEPT), and the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) are reviewed. We discuss the critical role of patient and family engagement, focusing on collaboration with Transplant Families. Finally, we review challenges common to the LHN concept and potential common areas of alignment to achieve the goal of more rapid and sustained progress to improve health in pediatric transplantation.

CONCLUSION

LHN in transplantation are essential to accelerate knowledge dissemination and improve outcomes.

摘要

背景

在过去的二十年中,学习健康网络(LHN)在医学领域得到了发展,但它们在移植领域的应用则更为近期。

目的和方法

在本文中,我们描述了三种终末期器官疾病/移植中的 LHN,它们的共同和独特特征,以及它们的“面向参与者”架构如何允许快速适应,以满足其患者和从业人员在最近的 COVID-19 大流行期间的需求。

结果

回顾了改善肾脏结局协作组织(IROC)、Starzl 儿科移植卓越网络(SNEPT)和先进心脏治疗改善结局网络(ACTION)的结构和重点。我们讨论了患者和家庭参与的关键作用,重点是与移植家庭的合作。最后,我们回顾了 LHN 概念的共同挑战以及可能的共同调整领域,以实现改善儿科移植健康的更快和更持续进展的目标。

结论

移植中的 LHN 对于加速知识传播和改善结果至关重要。

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Pediatric Learning Health Networks in Solid Organ Transplantation-Engaging all Stakeholders to Achieve Health for Children Who Require Transplantation.儿科学习型健康网络在实体器官移植中的应用-让所有利益相关者参与进来,为需要移植的儿童实现健康。
Pediatr Transplant. 2024 Nov;28(7):e14862. doi: 10.1111/petr.14862.
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