Network-based Learning Health Systems
Network name | Purpose | Primary outcome | Date founded | Number of network sites | Funding sources |
ImproveCareNow Network—Inflammatory Bowel Disease improvecarenow.org | Transform the health, care and costs for all children and adolescents with inflammatory bowel disease by building a sustainable collaborative chronic care network. | Clinical remission | 2007 | 96 paediatric care centres | Non-profit organisation. Funded through participation fees, philanthropy, grants and in-kind contributions |
Children’s Hospitals’ Solutions for Patient Safety (SPS) www.solutionsforpatientsafety.org | Eliminate serious harm associated with healthcare. | Reductions in hospital-acquired conditions, 7-day readmissions, serious safety events, days away restricted or transferred | 2009 | 112 hospitals | Cardinal Health Foundation, Children’s Hospital Association, Federal Partnership for Patients programme and participation fees |
Ohio Perinatal Quality Collaborative (OPQC) www.opqc.net | 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 infection | 2008 | 105 maternity hospitals; 23 outpatient maternity care providers; 52 neonatal units; 5 federally qualified health centres | State 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) https://npcqic.org/ | 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 | 2009 | 63 paediatric cardiology care centres | Participation fees from enrolled centres, federal and private grants |
Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) https://pr-coin.org/ | Dramatically improve the outcomes of care for all children with rheumatic conditions. | Patients with inactive/low disease activity score | 2010 | 18 paediatric rheumatology centres | Anonymous donors, foundations, federal grants, American College of Rheumatology and participation fees |
Autism Speaks—Autism Treatment Network/Autism Intervention Research Network on Physical Health http://airpnetwork.org/what-we-do/autism-learning-network | 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 development | 2015 | 12 academic medical centres | Health 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 life | 2015 | 29 cystic fibrosis clinics | Cystic Fibrosis Foundation |
Sickle Treatment and Outcomes Research in the Midwest (STORM) http://sicklestorm.org/ | Improve quality of life and health outcomes for all Midwesterners with sickle cell disease. | In development | 2014 | 6 haematology practice-based teams | Federal |
Improving Renal Outcomes Collaborative (IROC) https://irocnow.org/ | 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 rejection | 2016 | 23 nephrology clinics | Participation fees and donations |