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

 From The Lucile Packard Foundation for Children's Health



Date: Tuesday, December 7
Time: 10 to 11 a.m. Pacific Time

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Over the past three years, researchers and family leaders from across the country have partnered to develop a national research agenda focused on improving the health care system for children and youth with special health care needs. Their first product, a newly published article titled Improving Health Care Transitions for Children and Youth with Special Health Care Needs, is one in an eight-part series to be published as a supplement to Academic Pediatrics.

In this webinar, the article's authors will discuss the health care transition process for adolescents and young adults with special health care needs, describe their study's findings, and reflect on the implications of their recommendations. We suggest that attendees read the article prior to the webinar. Audience Q&A is highly encouraged.

Speakers

Image of Megumi (Megie) Okumura

Megumi (Megie) Okumura, MD, MAS
Associate Professor of Pediatrics and Internal Medicine, University of California, San Francisco

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.

Image of Mallory Cyr

Mallory Cyr, MPH
Program Manager, Children and Youth with Special Health Care Needs, Association of Maternal and Child Health Programs

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.”

Image of Ifeyinwa (Ify) Osunkwo

Ifeyinwa (Ify) Osunkwo, MD, MPH
Professor of Medicine and Pediatrics, Atrium Health and Director, Sickle Cell Disease Enterprise at Levine Cancer Institute

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.

Moderator

Image of Christopher Stille

Christopher Stille, MD, MPH
Professor of Pediatrics and Section Head of General Academic Pediatrics, University of Colorado School of Medicine and Children’s Hospital Colorado

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.


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