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A Conversation on Meaningful Family Engagement, from Clinical Care to Health Policy

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Engaging with families is vital to transforming the health care system and positively impacting the life course of vulnerable populations. Families have extensive experience in partnering with professionals to improve systems of care, are organized and connected across the country, and stand ready to assist at every level of next efforts for improvement. Learn how to meaningfully involve families at every level of health care systems and engage them as critical partners in designing policies that will improve care for all children.

Discussing, Families of Children with Medical Complexity: A View from the Front Lines, the lead author and experts in the field reviewed the article’s key content and shared thoughts on the implications of its recommendations. 

This article is part of a supplement to Pediatrics entitled, “Building Systems that Work for Children with Complex Health Care Needs.” 

Webinar Recording

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Speakers

Rylin Rodgers

Director of Public Policy, Association of University Centers on Disabilities

Rylin Rodgers is Director of Public Policy at the Association of University Centers on Disabilities where she works on federal policy and legislative issues that affect people with developmental disabilities and their families. Rylin previously served as the Training Director and Family Leadership Coordinator for the Riley Child Development Center, and was a founding board member of Family Voices Indiana. Her personal and professional experiences combine to provide a unique perspective on the impact of policy and of systems issues on the "end users."

Richard Antonelli, MD

Medical Director Integrated Care, Boston Children’s Hospital

Richard Antonelli is Assistant Professor of Pediatrics at Harvard Medical School, and is the Medical Director of Integrated Care at Boston Children’s Hospital. In 2015, he commenced a National Center for Care Coordination Technical Assistance, with funding from the U.S. Maternal and Child Health Bureau and support from National Center for Medical Home Implementation at the American Academy of Pediatrics. He is a member of the Technical Advisory Panel on Care Transitions at the Joint Commission.

Ruth E.K. Stein, MD, FAAP

Professor, Department of Pediatrics, Albert Einstein College of Medicine

Ruth E.K. Stein is Professor of Pediatrics at the Albert Einstein College of Medicine/Children's Hospital at Montefiore and has subspecialty boards in developmental and behavioral pediatrics. Dr. Stein is a past president of the Academic (previously Ambulatory) Pediatric Association and currently is a member of the National Academies of Science, Engineering, and Medicine’s Committee of Medical Experts to Assist Social Security on Disability Issues. She served as co-chair of a Board of Children, Youth, and Families study on the evaluation of child health, safety, and well-being.

Christopher Stille, MD, MPH

Professor of Pediatrics and Section Head, General Academic Pediatrics, University of Colorado School of Medicine, Children's Hospital Colorado

Christopher Stille is Professor of Pediatrics and Section Head of General Academic Pediatrics at the University of Colorado School of Medicine and Children's Hospital Colorado. The primary focus of his research has been improving communication and coordinated care for CYSHCN between primary care clinicians, subspecialists, and family members. He has led projects funded by the U.S. Maternal and Child Health Bureau, the Robert Wood Johnson Foundation, and local and regional funders to pursue this investigation.

Related Grants

Diversity, Equity, and Inclusion in Patient and Family Advisory Councils: Advancing Best Practice in Children's Hospitals

A new article in the Journal of Pediatric Health Care from the Institute for Patient- and Family-Centered Care and Cincinnati Children's Hospital Medical Center discusses best practices for supporting diverse membership in children's hospital patient and family advisory councils and advancing the involvement of patient and family advisors in hospital-wide diversity, equity, and inclusion projects and initiatives.

Access to Care in California: The CYSHCN Family Experience

This fact sheet summarizes the results of a survey of nearly 650 caregivers of CYSHCN about their experiences trying to access pediatric specialty care in California.

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