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Grants Target Quality of Care for Children with Complex Conditions, Parent Engagement

PALO ALTO – Improving health care for children with complex chronic conditions is the focus of two grants awarded November 1 by the Lucile Packard Foundation for Children's Health. A third grant will support development of tools to measure the impact of family engagement in policymaking for children with special health care needs.

In making a grant to the National Academy for State Health Policy (NASHP), the foundation noted that the cost of children's health care comprises a relatively small portion of public funding compared to care for the elderly. The result is that insufficient attention is paid to assessing the quality of child health care. One way to help improve care for children is for Medicaid or their managed care providers to monitor and report on specific quality measures. This grant to NASHP will support identification of states that are in the vanguard of requiring such assessments of the quality of their child health services. "States vary widely in the extent to which they use quality metrics for child health," said Edward Schor, MD, senior vice president at the foundation. "Our grantee will assess how the most successful state programs evaluate care, and we will disseminate that information to provide models for others states to improve their measurement standards and, consequently, to enhance quality of care."

A second grant will address the issue of categorizing children with chronic and complex conditions according to their need for services. The process, known as "tiering," can enable health care providers to offer more individualized and thus more efficient and effective care, but agreeing on standardized methods to accomplish such stratifications has been a challenge for the health care system. This grant to the University of Colorado will support researchers in reviewing what is known about tiering and assessing how personal, family, and social factors should influence tiering decisions. The grantees will design model service packages and consider financing strategies for multiple tiers. The work will be done by a collaborative that also includes Boston Children's Hospital and MassGeneral Hospital for Children.

Enhanced family engagement in policymaking is the goal of the third new grant. No one is better acquainted with the child health care system than those who live it every day, yet there is not consistent involvement of family representatives in program and policy decisions by public agencies and private organizations. Research funded by the foundation found that types of family participation and their degree of influence vary widely, and, in general, little is done to make family participation feasible and effective. Even when family participation is welcomed, there is little understanding of what constitutes effective engagement. A grant to Family Voices will address this issue, by identifying key criteria that affect family engagement and generating guidance for developing a reliable measure of family engagement.


About the Lucile Packard Foundation for Children's Health: The Lucile Packard Foundation for Children's Health is a public charity, founded in 1997. Its mission is to elevate the priority of children's health, and to increase the quality and accessibility of children's health care through leadership and direct investment. The Foundation works in alignment with Lucile Packard Children's Hospital Stanford and the child health programs of Stanford University. Through its Program for Children with Special Health Care Needs, the foundation supports development of a high-quality health care system that results in better health outcomes for children and enhanced quality of life for families.