Collaborative Improvement and Innovation Network for Children with Medical Complexity

Oregon is one of ten states participating in a four-year (2017-2021) Maternal and Child Health Bureau initiative to improve the quality of life for children with medical complexity (CMC), the well-being of their families, and the cost-effectiveness of their care, through development and implementation of innovative care and payment models using a Collaborative Improvement and Innovation Network (CoIIN) approach. OCCYSHN is leading Oregon’s participation in the CoIIN.

Oregon’s Advisory Team consists of Family Representatives, who are parents of young adults with medical complexity, and representatives of Children’s Health Alliance/Foundation, OHSU General Pediatrics, Shriners Hospital for Children Portland, and OCCYSHN. View Oregon's CMC CoIIN organizational chart.

Oregon's effort focuses on the transition from pediatric to adult healthcare.  After conducting an environmental scan, we honed our focus to the actual transfer of care from pediatric to adult providers. An analysis of root causes pointed to gaps in health care system infrastructure to facilitate the transfer of care, particularly in identifying adult providers to assume care for young adults with medical complexity, and paying providers for extra time needed to care for this population. The Oregon CoIIN team is partnering with Reem Hasan, MD, PhD, and Reyna Lindert, PhD, RN, with the Doernbecher Children’s Hospital General Pediatrics and Adolescent Health Clinic to test improvements to the transfer of care between pediatric and adult primary care for young adults who are medically complex.

Family involvement is fundamental to OCCYSHN’s work generally, and to this project specifically. OCCYSHN used a participatory approach to conducting the project's environmental scan. Family Representatives helped develop, implement, and analyze qualitative data collected through interviews with parents of young adults (aged 18-22) with medical complexity. Our Family Representatives and Principal Investigator presented about their collaboration at the 2019 Association of Maternal and Child Health Programs in San Antonio, Texas.

"All circuits ended": Family experiences of transitioning from pediatric to adult healthcare for young adults with medical complexity in Oregon (Shreya Roy et al.) Journal of Pediatric Nursing - June 2021. A paper authored by OCCYSHN CoIIN staff and Family Leaders.

FACT SHEET: Improving the Transition from Pediatric to Adult Health Care for Oregon’s Youth with Special Health Care Needs, April 2021

Who are children with medical complexity?

Children with Medical Complexity (CMC) are defined as those who experience “multiple significant chronic health problems that affect multiple organ systems and result in functional limitations, high health care need or utilization, and often the need for or use of medical technology” (Kuo & Houtrow, 2016, p. e1). To align with state efforts, Oregon has operationalized medical complexity using the “complex chronic disease” category of the Pediatric Medical Complexity Algorithm (PMCA; Simon et al., 2014). These are children who have significant, chronic conditions in two or more body systems; a progressive condition that is associated with deteriorating health with a decreased life expectancy in adulthood; continuous dependence on technology for at least six months; and/or a progressive or metastatic malignancy that affects life function (excluding those in remission for more than five years). The State of Oregon estimates that more than six percent of children under 18 years old who are insured through Medicaid experience complex chronic disease.