James M Anderson Center for Health Systems Excellence
Active Learning Health Networks

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.

Advanced Cardiac Therapies Improving Outcomes Network logo.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.

Learn more about ACTION here, follow on Twitter, or review the "About ACTION" handout.  Also see the new educational site which was launched in the Fall of 2020.

Thrive logo.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 network’s continued work includes a substantial focus on work with their community partners from now through 2033. This work focuses on eliminating disparities in physical and mental health outcomes and mortality; supporting Cincinnati Public Schools to see 100% of Cincinnati’s children enrolled, enlisted, or employed by the age of 18 and 100% of Cincinnati’s children meeting kindergarten, 3rd, and 9th grade academic metrics; reducing food insecurity by 50% or more; reducing child abuse and neglect by 50%; and co-producing 100% of their community initiatives with families.

Learn more about All Children Thrive on Facebook and Twitter.

AIR logoThe 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.

Learn more about the Autism Care Network.

CF Foundation.The Cystic Fibrosis Foundation supports the Cystic Fibrosis Learning Network (CFLN), which aims to ensure all people involved with cystic fibrosis (CF) care have access to the information, resources and treatments they need to enable individuals with CF to live full, productive lives. A total of 36 CF care programs across the United States currently participate in the CFLN, representing the clinical care of over 20% of people with CF in the United States. Participating teams are contributing to improvement initiatives focused on recognizing pulmonary function indicators of potential exacerbations, shared agenda setting with patients and family caregivers for upcoming clinic visits, successful administration of multidisciplinary televisits and gathering data from patients about their health-related quality of life. The CFLN has achieved its goal of entering select clinical data into the Cystic Fibrosis Foundation Patient Registry within 30 days of a clinic visit for over 90% of visits.

Epilepsy Learning Healthcare System logo.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.

Learn more about the Epilepsy Learning Healthcare System.

Fontan Outcomes NetworkThe 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.

FON is taking an ambitious approach to enroll care centers and patients in the registry. After an initial year with 12 pilot care centers, FON has the goal of engaging 50 care centers and enrolling 10,000 patients in its first three years. FON strives to enroll as many patients as soon as possible because the network understands the need for high-quality data to be available as quickly as possible to researchers and care centers for improvement.

Learn more about the Fontan Outcomes Network.

ImproveCareNow, a network focused on pediatric inflammatory bowel disease (IBD), aims to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis by building a sustainable collaborative chronic care network. ImproveCareNow enables patients, families, clinicians and researchers to work together in a learning healthcare system to accelerate innovation, discovery and the application of new knowledge. ImproveCareNow had six centers in its pilot network in 2007; today, ICN has more than 100 care centers around the globe working together toward a mission to have all children and youth with Crohn’s disease and ulcerative colitis cared for at an ImproveCareNow center. Currently 82 percent of patients at ICN care centers are in clinical remission (feeling well and fully active), 91 percent have satisfactory nutrition, 95 percent have satisfactory growth and 97 percent are not taking steroids. Since 2007, remission rates have risen from 55 percent to 82 percent, without new medications.

Learn more about ImproveCareNow’s success, and connect with us on Twitter, Facebook and Instagram.

IROC logo.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.

IROC officially launched in the fall of 2016 and has been enrolling patients since 2017. The collaborative’s current priorities are improving blood pressure control, decreasing acute allograft rejection, and improving the quality of life for patients and caregivers. To date, IROC has marked several successes, including registering more than 3,700 patients with 33,000 visits into the registry, publishing ten research manuscripts and achieving greater than 86 percent of patients with controlled systolic blood pressure across the network.

Learn more about the Improving Renal Outcomes Collaborative.

NPCQIC.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. 

NPC-QIC’s phase I work focused on improving outcomes for infants with HLHS during the interstage (between discharge from the initial open-heart surgery and admission for a bi-directional Glenn procedure). Phase I has been transformational for the field, both because of the improvements accomplished to date and because of the development of a parent, clinician and scientist community to broadly disseminate successful improvement strategies. To date, the network’s patients who are discharged home between stage 1 and stage 2 surgeries have a 95 percent chance of surviving the interstage period, 87 percent of whom have satisfactory growth during the interstage period. Since July 2013, the interstage mortality rate across centers participating in NPC-QIC has fallen by 49 percent; this reduction in the mortality rate from July 2013 is estimated to represent over 110 lives saved (and counting). This is the equivalent of four classrooms of kindergartners! NPC-QIC has also developed a bundle (or set of changes) that has improved growth outcomes in infants prior to their second open-heart surgery.

In 2016, NPC-QIC launched phase II of its work, expanding the scope of its improvement and research efforts from the interstage period to the interval between diagnosis and celebration of the first birthday for HLHS patients. NPC-QIC’s phase II work utilizes a learning and improvement framework consisting of three levels of projects: Path 1, Path 2 and Path 3. These path projects provide participating Care Centers with a variety of opportunities for quality improvement work at their local site, within multiple sites and across the entire collaborative. Active projects include: Gross Motor Development, Preoperative Feeding, Unplanned Reinterventions, Health Equity, Tube Weaning and Surgical Coaching.

Learn more about the National Pediatric Cardiology Quality Improvement Collaborative.

Ohio Perinatal Quality Collaborative (OPQC).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.

Current projects include ensuring compassionate, respectful, and equitable care for pregnant and postpartum moms, identifying useful strategies to support maternal-infant dyad care for moms with Opioid Use Disorder (OUD) and their infants, understanding how to improve the discussion and distribution of Narcan to pregnant and postpartum moms with OUD; assessing the use of the Ohio Department of Medicaid Pregnancy Risk Assessment Form, and guiding improvement efforts for teams participating in a statewide Maternal Safety project focused on severe maternal hypertension / preeclampsia.

Examples of previous projects include the Neonatal Opioid Withdrawal Syndrome (NOWS) Project which increased compassionate care and reduced length of treatment and length of stay for the more than 9,600 infants treated for NOWS in Ohio; the 39 week Early Elective Delivery / Birth Registry Accuracy Project which reduced early elective deliveries without medical indication across Ohio by 75 percent; the Nosocomial Infection project which reduced bloodstream infections by 31 percent in very low birthweight infants hospitalized in Ohio NICUs; and the NICU Graduates Project which designed a care transition and coordination plan for infants with complex conditions and technology dependence.

Funding support comes from the Ohio Departments of Health and Medicaid, and the Centers for Disease Control and Prevention.

Learn more about the Ohio Perinatal Quality Collaborative.

Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) .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.

Learn more about PR-COIN here or by connecting with the network on Twitter and Facebook.

Children’s Hospitals’ Solutions for Patient Safety (SPS) Network.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.

SPS is the only effort in the nation that is specifically focused on improving pediatric and employee/staff safety. The network is rooted in the fundamental belief that when we share successes and failures transparently, children’s hospitals can achieve goals more effectively and quickly. SPS’ portfolio of work is currently focused on reducing harm by decreasing rates of the most common serious patient and employee/staff harms; improving safety culture; identifying and eliminating safety disparities; and creating robust learning systems for ambulatory safety.

Learn more about Solutions for Patient Safety and follow SPS on LinkedIn, Twitter, and Facebook.

What is a Learning Network?

Contact Us

For more information, email: learningnetworks@cchmc.org