Catalysts for Change: The Role of Nonprofits in Solving Single Ventricle Heart Disease.

Single ventricle (SV) heart disease comprises a spectrum of complex congenital heart defects (CHDs), including hypoplastic left heart syndrome (HLHS), one of the most common causes of death amongst infants with CHD. Despite its incompletely defined etiology and a dearth of curative solutions, SV is a solvable problem that can be addressed by unifying a nascent field that is ripe for investment, in part due to its high economic impact and growth potential. Here, we explore the landscape of SV and identify areas of opportunity that will yield an outsized impact through strategic investment that focuses on synchronization across disciplines, community involvement, and infrastructure development, and argue that nonprofits are the appropriate catalyst to spark transformative innovation and impact in the form of functional cures.

The Fontan outcomes network: first steps towards building a lifespan registry for individuals with Fontan circulation in the United States.

The Fontan Outcomes Network was created to improve outcomes for children and adults with single ventricle CHD living with Fontan circulation. The network mission is to optimise longevity and quality of life by improving physical health, neurodevelopmental outcomes, resilience, and emotional health for these individuals and their families. This manuscript describes the systematic design of this new learning health network, including the initial steps in development of a national, lifespan registry, and pilot testing of data collection forms at 10 congenital heart centres.

Transparency in a Pediatric Quality Improvement Collaborative: A Passionate Journey by NPC-QIC Clinicians and Parents.

Transparency-sharing data or information about outcomes, processes, protocols, and practices-may be the most powerful driver of health care improvement. In this special article, the development and growth of transparency within the National Pediatric Cardiology Quality Improvement Collaborative is described. The National Pediatric Cardiology Quality Improvement Collaborative transparency journey is guided by equal numbers of clinicians and parents of children with congenital heart disease working together in a Transparency Work Group. Activities are organized around four interrelated levels of transparency (individual, organizational, collaborative, and system), each with a specified purpose and aim. A number of Transparency Work Group recommendations have been operationalized. Aggregate collaborative performance is now reported on the public-facing web site. Specific information that the Transparency Work Group recommends centers provide to parents has been developed and published. Almost half of National Pediatric Cardiology Quality Improvement Collaborative centers participated in a pilot of transparently sharing their outcomes achieved with one another. Individual centers have also begun successfully implementing recommended transparency activities. Despite progress, barriers to full transparency persist, including health care organization concerns about potential negative effects of disclosure on reputation and finances, and lack of reliable definitions, data, and reporting standards for fair comparisons of centers. The National Pediatric Cardiology Quality Improvement Collaborative's transparency efforts have been a journey that continues, not a single goal or destination. Balanced participation of clinicians and parents has been a critical element of the collaborative's success on this issue. Plans are in place to guide implementation of additional transparency recommendations across all four levels, including extension of the activities beyond the collaborative to support transparency efforts in national cardiology and cardiac surgery societies.