NLM logo

National Information Center on Health Services Research and Health Care Technology (NICHSR)

HSRProj (Health Services Research Projects in Progress)

Information about ongoing health services research and public health projects


ImproveCareNow: a learning health system for children with Crohn's disease and ulcerative colitis
Investigator (PI): Margolis, Peter
Performing Organization (PO): (Current): Cincinnati Children's Hospital Medical Center, James M. Anderson Center for Health Systems Excellence / (513) 636-2501
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2014
Final Year: 2015
Record Source/Award ID: PCORI/PPRN-1306-01754
Funding: Total Award Amount: $1,008,329
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: The ImproveCareNow (ICN) Network is poised to become a reusable, scalable, and sustainable peer production learning health system (LHS) in which patients and clinicians collaborate to learn from every interaction, conduct patient-centered outcomes research, and implement the findings. ICN has developed and piloted programs to fully engage patients, clinicians, and researchers as equal partners, but these programs are not yet at scale. ICN has extensive, standardized clinical data, but has not yet collected patient-reported outcomes (PROs) from the vast majority of patients. To complete ICN's transformation, we propose to 1) implement a full-scale peer-production system that engages patients, families, clinicians, and researchers working together to conduct research and improve health and health care; and 2) develop the infrastructure to assemble a comprehensive set of longitudinal patient-centered data. ICN's mission is to transform the health, care, and costs for children and adolescents with Crohn's disease and ulcerative colitis--inflammatory bowel disease (IBD). As a network that engages patients, families, and clinicians in research and improving outcomes, ICN has achieved remarkable success. Since 2007, the proportion of patients in remission (with inactive disease) has increased from 55% to 77% and 95% of patients approached have consented for research. ICN has grown to 56 sites that provide care for 17,000 patients in 30 states; about 1/3 of all children with IBD in the US. With support from an NIH Transformative Research grant (R01 DK085719), ICN has partnered with the C3N Project to develop and test interventions to transform itself into a peer-production system to improve health and health care. In a peer production model, the production of new knowledge and know-how is distributed among all participants. Wikipedia, the best-known example of peer production, stands in contrast to the firm-produced (and defunct) Microsoft Encarta. Applying peer production to the LHS model means that patients, parents, clinicians, and researchers collaborate as peers to produce information (e.g., clinical data, patient-reported outcomes), knowledge (informal insights and formal research), and know-how (about how to change care) to improve health care and health outcomes. With PCORI funding, we propose to implement the peer production model at scale, dramatically expanding and enhancing patient and family participation in governance, research, and dissemination and implementation activities. With support from an Agency of Healthcare Quality and Research (AHRQ) Enhanced Registries grant (R01 HS20024), we built on open-source software to enhance the ICN registry to enable clinicians to collect data once using the electronic health record (EHR), and to re-use the data to automate chronic care processes, quality improvement (QI), and comparative effectiveness (CE) research. Through continuation funding (AHRQ R01 HS22974), we are extending this infrastructure to capture laboratory and pharmacy data. With PCORI funding, we propose to broaden the range of data collected to include PROs and claims data, and work with other PPRNs and CDRNs to implement data standards for interoperability and exchange of data. ICN has benefited from substantial federal investment; with PCORI funding, we propose to complete the transformation to a full-scale peer production LHS. As an exemplar PPRN, we are fully committed to accelerating other PPRN's transformation and in participating in the national patient-centered clinical research infrastructure in collaboration with the coordinating center. As well, this proposal is one of a federation of two pediatric PPRNs (ICN and the National Pediatric Cardiology Quality Improvement Collaborative) and a pediatric CDRN (PEDSNet) that proposes to create a national pediatric LHS.
MeSH Terms:
  • Colitis, Ulcerative /*therapy
  • Computer Systems
  • Crohn Disease /*therapy
  • Electronic Health Records
  • Humans
  • National Institutes of Health (U.S.)
  • Outcome Assessment, Health Care
  • Patient-Centered Care /organization & administration
  • Peer Group
  • Pilot Projects
  • Quality Improvement
  • Remission Induction
  • Social Support
  • Software
  • United States
  • United States Agency for Healthcare Research and Quality
Country: United States
State: Ohio
Zip Code: 45229
UI: 20143605
Project Status: Completed
Related Records: PCORnet patient-powered research network phase II: ImproveCareNow Network