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PERSPECTIVE article

Front. Pediatr.
Sec. Pediatric Rheumatology
Volume 12 - 2024 | doi: 10.3389/fped.2024.1428758
This article is part of the Research Topic Building a Learning Health System in Pediatric Rheumatology View all 3 articles

The Critical Role of Parents Within a Learning Health Network

Provisionally accepted
Kerry Ferraro Kerry Ferraro *Jenny Leal Jenny Leal Anna Sutton Anna Sutton Susan Peters Susan Peters Corinne Pinter Corinne Pinter
  • Pediatric Rheumatology Care and Outcomes Improvement Network, Seattle, United States

The final, formatted version of the article will be published soon.

    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.

    Keywords: engagement, parent, Partners, juvenile arthritis, Quality Improvement, pediatric rheumatology, Learning health network, Co-production

    Received: 07 May 2024; Accepted: 12 Jul 2024.

    Copyright: © 2024 Ferraro, Leal, Sutton, Peters and Pinter. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: Kerry Ferraro, Pediatric Rheumatology Care and Outcomes Improvement Network, Seattle, United States

    Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.