Learning to make a difference for chILD: Value creation through network
collaboration and team science
Abstract
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.