Table 1

Network-based Learning Health Systems

Network namePurposePrimary outcomeDate foundedNumber of network sitesFunding sources
ImproveCareNow Network—Inflammatory Bowel Disease
Transform the health, care and costs for all children and adolescents with inflammatory bowel disease by building a sustainable collaborative chronic care network.Clinical remission200796 paediatric care centresNon-profit organisation. Funded through participation fees, philanthropy, grants and in-kind contributions
Children’s Hospitals’ Solutions for Patient Safety (SPS)
Eliminate serious harm associated with healthcare.Reductions in hospital-acquired conditions, 7-day readmissions, serious safety events, days away restricted or transferred2009112 hospitalsCardinal Health Foundation, Children’s Hospital Association, Federal Partnership for Patients programme and participation fees
Ohio Perinatal Quality Collaborative (OPQC)
Through collaborative use of improvement science methods, reduce preterm births and improve perinatal and preterm newborn outcomes in Ohio as quickly as possible.Prematurity rates, rates of early elective delivery, length of stay, length of treatment for infants with neonatal abstinence syndrome, late-onset nosocomial infection2008105 maternity hospitals; 23 outpatient maternity care providers; 52 neonatal units; 5 federally qualified health centresState funding through Ohio Department of Health and Ohio Department of Medicaid; grants (Centers for Disease Control and Prevention)
National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC)
Reduce mortality and increase quality of life for infants with single-ventricle congenital heart disease.Phase 1: interstage survival and growth rates
Phase 2: improve outcome between diagnosis and first birthday
200963 paediatric cardiology care centresParticipation fees from enrolled centres, federal and private grants
Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN)
Dramatically improve the outcomes of care for all children with rheumatic conditions.Patients with inactive/low disease activity score201018 paediatric rheumatology centresAnonymous donors, foundations, federal grants, American College of Rheumatology and participation fees
Autism Speaks—Autism Treatment Network/Autism Intervention Research Network on Physical Health
Improve the lives of all children and families with autism spectrum disorder by making a high-quality, comprehensive and multidisciplinary continuum of care accessible within local communities.In development201512 academic medical centresHealth Resources and Services Administration, Maternal and Child Health Bureau, Autism Speaks
CF Care Model of the Future
(web site under construction)
Increase life expectancy for people with cystic fibrosis (CF) until normal life span is reached.Lung function, nutrition, quality of life201529 cystic fibrosis clinicsCystic Fibrosis Foundation
Sickle Treatment and Outcomes Research in the Midwest (STORM)
Improve quality of life and health outcomes for all Midwesterners with sickle cell disease.In development20146 haematology practice-based teamsFederal
Improving Renal Outcomes Collaborative (IROC)
Partner with patients with kidney disease and their caregivers to achieve health, longevity and quality of life equivalent to the general population.Blood pressure control, decreased rejection201623 nephrology clinicsParticipation fees and donations