A Family-Centered Research Agenda for Improving Health Care Transitions for Children with Special Health Care Needs

Megumi (Megie) Okumura studies interventions that address barriers and facilitators to transitioning from pediatric- to adult-focused health systems for children with special health care needs (CSHCN). She is dual-board certified in Internal Medicine and Pediatrics; has a health services research background through the Robert Wood Johnson Foundation Clinical Scholars Program; completed a fellowship in health policy; and focused her master’s degree on implementation and dissemination sciences. Her research portfolio on improving transitions of care for CSHCN has been funded by numerous federal agencies and foundations. In addition to research and teaching, she has a primary care practice in Internal Medicine that focuses on adults with childhood onset chronic conditions. She is the scientific co-chair of the Health Care Transition Research Consortium, and she serves on the WITH Foundation Board of Directors.

With over a decade of experience in the field of maternal and child health policy, Mallory has served on advisory committees for the National Center on Healthcare Transition Improvement, Youth Move National, the Catalyst Center, the National Genetics Alliance, and the Children & Youth with Special Health Care Needs National Research Network and as a Genetic Ambassador for the Mountain States Regional Genetics Network. Mallory has provided keynote presentations and technical assistance across the country on the topics of transition to adulthood, meaningful stakeholder engagement, and self-determination for young people with complex medical needs and disabilities. In her “free time,” Mallory enjoys writing, speaking, and is the co-host of the podcast “With Mais & Mal.”

Ifeyinwa (Ify) Osunkwo has over 28 years of clinical and research experience in sickle cell disease (SCD). She earned her MD from University of Nigeria and her MPH from Johns Hopkins University. She completed her pediatric residency at University of Medicine and Dentistry of NJ, and pediatric hematology/oncology/bone marrow transplantation fellowship at Columbia University. In 2014, she founded the SCD Enterprise at Levine Cancer Institute providing care for adults with SCD across North and South Carolina. Ifeyinwa led the establishment of a national model for SCD pediatric to adult care transition leveraging peer mentorship and community engagement while at Emory University and published a guidebook for the Georgia Department of Public Health. She is Principal Investigator for the 14-site ST3P-UP Transition Study, a $9.8 million project funded by the Patient-Centered Outcomes Research Institute.

Christopher Stille leads a group of 50 pediatric faculty, practices and teaches primary care pediatrics, and conducts pediatric health services research and quality improvement efforts focused on improving systems of care for children and youth with special health care needs (CYSHCN) in the Medical Home. His research is focused on improving communication and coordinated care for CYSHCN between primary care clinicians, subspecialists, and family members. He is also the Principal Investigator of an MCHB-funded national network to conduct health systems research for CYSHCN. Christopher is a co-chair of the Standing Committee on Patient Experience and Function of the National Quality Forum. Additionally, he is a member of the Executive Committee of the Council on Children with Disabilities of the American Academy of Pediatrics.