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Learning to make a difference for chILD: Value creation through network collaboration and team science
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  • Lauren McKnight,
  • André Schultz,
  • Nada Vidic,
  • Elizabeth Palmer,
  • Adam Jaffe
Lauren McKnight
University of New South Wales

Corresponding Author:[email protected]

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André Schultz
Telethon Kids Institute
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Nada Vidic
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Elizabeth Palmer
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Adam Jaffe
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Addressing the recognised challenges and inequalities in providing high quality health care for rare diseases such as children’s interstitial lung disease (chILD) requires collaboration across institutional, geographical, discipline, and system boundaries. The Children’s Interstitial Lung Disease Respiratory Network of Australia and New Zealand (chILDRANZ) is an example of a clinical network that brings together multidisciplinary health professionals for collaboration, peer learning, and advocacy with the goal of improving the diagnosis and management of this group of rare and ultra-rare conditions. This narrative review explores the multifaceted benefits arising from social learning spaces within rare disease clinical networks by applying the Value Creation Framework. The operation of the chILDRANZ network is used as an example across the framework to highlight how value is generated, realised, and transferred within such collaborative clinical and research networks. The community of clinical practice formed in the chILDRANZ multidisciplinary clinical peer support meetings provides a strong example of social learning that engages with the uncertainty inherent in rare disease diagnosis and management and pays attention to generate new knowledge and best practice to make a difference for children and families living with chILD. This review underscores international calls for further investment in, and support of, collaborative expert clinical networks for rare disease.
01 Nov 2022Submitted to Pediatric Pulmonology
02 Nov 2022Submission Checks Completed
02 Nov 2022Assigned to Editor
02 Nov 2022Review(s) Completed, Editorial Evaluation Pending
15 Nov 2022Reviewer(s) Assigned
22 Dec 2022Editorial Decision: Revise Minor
20 Jan 20231st Revision Received
24 Jan 2023Submission Checks Completed
24 Jan 2023Assigned to Editor
24 Jan 2023Review(s) Completed, Editorial Evaluation Pending
24 Jan 2023Reviewer(s) Assigned
25 Feb 2023Editorial Decision: Accept