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Health care providers, payers, and systems serving children, youth and families increasingly focus on family engagement as a strategy to improve health care delivery, enhance consumer and provider satisfaction, and reduce costs. Assessing how well an organization or agency is engaging families is a critical step in achieving these goals.

A recent issue brief from Family Voices, A Framework for Assessing Family Engagement in Systems Change, proposes four domains of family engagement – representation, transparency, impact and commitment. Learn more about this framework as we explore models of success and discuss common barriers to incorporating meaningful family engagement in systems-level initiatives.

Download the Family Engagement in Systems Assessment Tools 

Webinar Recording


Beth Dworetzky

Project Manager, Family Voices

Ms. Dworetzky manages several Family Voices projects that focus on building the capacity of systems of care to better serve children and youth with special health care needs (CYSHCN) and promoting meaningful family engagement at all levels of the systems that serve all children. She is the team lead for the Family Engagement in Systems Assessment Tool and Toolkit project. Prior to joining Family Voices, Ms. Dworetzky was the project director for the MA Family-to-Family Health Information Center and a project director for the national center for improving health insurance for CYSHCN. In both those capacities, she developed expertise in analyzing qualitative and quantitative data, and developing evaluation and assessment tools.

Nanfi Lubogo

Co-Executive Director, PATH Parent to Parent/Family Voices of Connecticut

Ms. Lubogo is a wife and mother of 3 children. Her daughter Stephanie is diagnosed with multiple special needs. Her professional background is focused on parent to parent support with a particular interest in cultural competency, emergency medical services for children and youth with special health care needs and parent leadership training and development. Ms. Lubogo currently serves on the CT UCEDD Consumer Advisory Board, CT Office of Healthcare Innovation SIM Consumer Advisory Board, National Emergency Medical Services for Children Family Advisory Network, Department of Transportation National EMS Advisory Council and is the State Affiliate Organization Representative to the Family Voices Board of Directors.

Susan Chacon

President, Association of Maternal and Child Health Programs and Title V Director for Children’s Medical Services, Children and Youth with Special Health Care Needs program, New Mexico

Through the New Mexico Title V programs, Ms. Chacon works to assure a statewide system of coordinated, compassionate, family centered and culturally competent care for children who have chronic medical conditions and/or disabilities. This includes increasing access to primary care, dental care, behavioral health and pediatric specialty care for children in the State with special needs especially in rural areas. The program has oversight of newborn screening and assures that all newborns born in the State receive timely screening and treatment for congenital conditions. 

Beverley H. Johnson, BSN, FAAN

President and Chief Executive Officer, Institute for Patient- and Family-Centered Care

Ms. Johnson has provided technical assistance and consultation for advancing the practice of patient- and family-centered care and creating effective partnerships with patients and families to over 300 hospitals, health systems, and federal, state, and provincial agencies. She currently serves as a member of the American Hospital Association Quest for Quality Prize Committee and was a member of the inaugural Advisory Board for the American College of Physicians’ Center for Patient Partnership in Healthcare. She is also a member of the Board of Directors for the Patient-Centered Primary Care Collaborative and the Association of American Medical Colleges.

Related Grants

This virtual cafe provided a brief overview of key topics, major frameworks, and emerging trends to advance the quality of life and well-being of children with medical complexity and their families. The café was the first of a six-part series led by the Center for Innovation in Social Work and Health at the Boston University School of Social Work.

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.