Active Learning Health Networks
Learning health networks have grown to encompass 558 teams across 286 pediatric care organizations in 43 states and Washington, DC, and five countries, including Belgium, Canada, Qatar and the United Kingdom. Systematic implementation of quality improvement science and increasing engagement and partnership with patients and families have resulted in improved outcomes, such as increases in remission and physical functioning and decreases in premature births, serious safety events and mortality.
Founded in 2017, The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) is made up of 52 sites within North America and 7 sites internationally and consists of clinicians, researchers, parents and patients from across a wide variety of medical institutions. ACTION’s goal is to improve critical outcomes for children with heart failure by uniting providers and families, sharing data and outcomes transparently, improving education and standardizing best practices. The learning network approach helps ACTION drive improvement in areas that are untouched by clinical trials alone. The network’s initial focus was on improving outcomes for pediatric ventricular assist device (VAD) patients, and they are now working towards improving outcomes for all heart failure patients. By learning and working together, ACTION can make improvements faster across this collaborative system.
The All Children Thrive (ACT) Learning Network is an innovative, city-wide collaborative that includes families, community members, social agencies, educators and healthcare providers. ACT works to identify and address major disparities in health and well-being, and improve the quality, effectiveness and availability of care and support to ensure that Cincinnati’s 66,000 children are the healthiest in the nation. Network successes include improving infant mortality and prematurity by transforming prenatal care, reducing excess days spent in the hospital instead of in school or at play, significantly increasing the number of young children receiving all preventive services by age five and supporting children reading proficiently or better by third grade. 
The Autism Care Network (ACNet) began in December 2014 and is a growing network of 20 academic medical centers in the US and Canada specializing in multidisciplinary medical care for children with autism spectrum disorder (ASD). The primary aims, designed by families and clinicians, of ACNet are (1) to improve the health and quality of life for children with ASD and (2) to decrease the number of children with ASD with moderate, severe or extremely severe behaviors focusing on improved identification and treatment of symptoms of Attention Deficit Hyperactivity (ADHD), Anxiety and Irritability. ACNet continues to evolve as a learning health system working with the James M. Anderson Center for Health Systems Excellence and in collaboration with patients, families, clinicians and researchers.
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Founded in 2018, ELHS is a growing network of 13 pediatric and adult epilepsy centers and 18 community partner organizations across the United States. By connecting epilepsy centers with each other and with community service providers, and co-producing with people with epilepsy and their families, the ELHS will empower all people with epilepsy to live their highest quality of life, striving for freedom from seizures and side effects. They won’t stop until they get there.
The Fontan Outcomes Network (FON) is a lifespan learning health network created by and for a community of patients, families, clinicians and researchers who together seek to transform outcomes for all people affected by single ventricle heart disease. FON’s mission is to optimize longevity and quality of life by dramatically improving physical health and functioning, neurodevelopment, and emotional health and resilience for individuals with Fontan circulation and their families. FON has the opportunity to dramatically change outcomes for children, teens and adults living with Fontan circulation by enabling discovery, translating research into practice and transforming the health of these individuals. 
The Improving Renal Outcomes Collaborative (IROC) is a learning health network of clinicians and researchers from 43 of the most advanced pediatric institutions in the country who partner with children with kidney disease and their caregivers to achieve health, longevity, and quality of life equivalent to the general population. To accomplish this, more than 500 members including caregivers and patients work together to share best practices and health data, implement research-based methods and apply quality improvement methods to improve outcomes.
The National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) is a learning health network of more than 70 pediatric cardiology centers that, through a strong partnership with Sisters-by-Heart, a parent advocacy group, work to decrease mortality and improve quality of life for infants with single ventricle congenital heart disease and their families. NPC-QIC’s registry of infants with hypoplastic left heart syndrome (HLHS) is the largest in the world with more than 2,100 patients. NPC-QIC highlights span improvement, innovation and discovery. 
Through collaborative use of improvement science methods, the Ohio Perinatal Quality Collaborative (OPQC) aims to reduce preterm birth and improve maternal and birth outcomes across Ohio as quickly as possible. OPQC works in partnership with clinicians, patients, and state stakeholders. 
The Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) began in 2011 and is a growing network of 21 North American rheumatology care centers focused on improving care and outcomes for children with rheumatic conditions, including juvenile idiopathic arthritis (JIA), a chronic condition without cure that causes joint swelling, pain and reduced quality of life and requires treatment with immunosuppressive medication. PR-COIN member centers have improved many care delivery processes and have increased the number of patients with inactive or low disease activity as reflected by lower mean Juvenile Arthritis Disease Activity.
Children’s Hospitals' Solutions for Patient Safety (SPS) is a learning and improvement network with a mission to eliminate serious harm across all children’s hospitals by employing high-reliability concepts and quality improvement science methods. SPS began as a pilot improvement effort with eight Ohio children’s hospitals in 2005. The network was initially designed to tackle two critically important pediatric healthcare measures — surgical site infections (SSI) and adverse drug events (ADE). By 2012, 25 hospitals from across the nation joined the first phase of the SPS network. Today, SPS is a network of 140+ children’s hospitals working together to help each individual hospital make progress on a journey to zero harm.
