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Family Engagement in Research and Improvement Activities

Presented by
Janet Seide and Amy Kratchman

Janet Seide discussed utilizing family engagement within a division of Developmental & Behavioral Pediatrics at an academic medical center. Janet currently serves as the Family Outreach Associate in The Kelly O’Leary Center and is the Lead of the Division of Developmental and Behavioral Pediatrics Family Advisory Council at Cincinnati Children’s Hospital Medical Center, a council she, along with two colleagues created. She is a graduate of the Leadership Education in Neurodevelopmental and related Disabilities (LEND) program and completed a certificate of graduate study in autism. Janet is also the parent of a young man with Autism Spectrum Disorder.

Amy Kratchman discussed family engagement in research including all stages from asking a question to designing a study. Amy has been working with clinicians and researchers since 2008 providing the family voice to numerous projects because of her role as the mother of a child with autism and two children with mitochondrial disease. She is a Family Consultant at The Children’s Hospital of Philadelphia where she collaborates with senior hospital leaders and staff in the development of Family Centered Care initiatives across the organization to support operating plan goals and key unit program goals. She has also developed a crucial leadership role for herself (and other families) within the Research arm of the hospital.