• Event and Webinar Recaps

    Current Issues Facing CSHCN and Their Families

    A wide range of issues must be addressed to improve the system of care for children with special health care needs.Staff members of the Lucile Packard Foundation for Children’s Health presented an overview of topics that are a priority and related work that currently is under way to improve the system.

  • Research & Reports

    Identifying and Serving Children with Health Complexity: Spotlight of Efforts to Develop and Pilot the Kaiser Permanente Northwest Pediatric Care Together Program

    Children with medical complexity (CMC) face unique medical and social factors that affect their health and access to health care services. Health systems play an important role in addressing both factors. The Oregon Pediatric Improvement Partnership and Kaiser Permanente Northwest have joined forces to share their approaches to using system- and practice-level data to better identify appropriate care coordination and health management supports for CMC.

  • Issue Briefs

    Survey Compares Adult and Pediatric Chronic Condition Management in Primary Care Practices

    Though most commonly associated with adults, chronic care management is becoming increasingly important in pediatric practices as the number of children with complex chronic conditions continues to grow. As the need for smooth transition of these patients from pediatric to adult care is increasing, a new analysis sheds some light on the differences between pediatric and adult internal medicine practices.

  • Issue Briefs

    The Future of Pediatrics: Redefining Chronic Care

    “Chronic” is a way of providing health care that is too often limited to patients with chronic medical conditions. In a new issue brief, Edward Schor, MD, proposes a definition of chronic care and describes how it should be the care model used not only for children with special health care needs but also for well-child care. Both are intended to promote lifelong health.

  • Event and Webinar Recaps

    A New Approach to Assessing Family Engagement in Health Care Systems

    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. Learn about a framework for assessing family engagement in systems change, models of success, and discover common barriers to incorporating meaningful family engagement in systems-level initiatives.

  • Fact Sheets

    Five Top Tips for Engaging Families in Advisory Roles: Advice from a Family Leader

    How do organizations and agencies serving children with special health care needs recruit family members to serve on an advisory committee? How do they encourage commitment to their role? How do they maintain engagement with them? This fact sheet provides recommendations for meaningfully engaging a group of family advisors.

  • Issue Briefs

    Parent Survey: Most Valuable Components of Medical Home

    The evidence is clear that care in a pediatric medical home results in improved health outcomes, increased family satisfaction, and decreased cost of care. A statewide survey queried California parents on which components of a medical home they most value, and how satisfied they are with the care their child receives. 

  • Research & Reports

    Achieving Care Integration for Children with Medical Complexity: The Human-Centered Design Approach to Care Coordination

    Taking a fresh look at the perennial issue of how to provide effective care coordination, a team of researchers has reimagined the process using human-centered design, an approach that focuses on the users’ needs. The goal is to integrate all sectors of care and support – medical, educational, financial and other services – so that care can be delivered effectively and better meet the needs of children, families, providers, and payers.

  • Research & Reports

    National Standards for CYSHCN: A Compendium of National Data and Quality Measure Sets

    Quality measurement is a critical component of state health programs, including Medicaid and State Title V CYSHCN programs. This new compendium highlights quality measures aligned with key elements for a system of care for children and youth with special health care needs, as outlined in the National Standards of Care for Children and Youth with Special Health Care Needs. This tool compiles data and quality measures from applicable and widely used measure sets. Identification of data and quality measures can help states evaluate how well their system of care is serving CYSHCN.


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