The Eye of the Beholder: A Discussion of Value and Quality From the Perspective of Families of Children and Youth With Special Health Care Needs

Abstract

There is broad agreement that increasing the cost-effectiveness and quality of health care services, thereby achieving greater value, is imperative given this country’s current spiraling costs and poor health outcomes. However, how individuals or stakeholder groups define value may differ significantly. Discussion of value in the context of health care, in particular value-based purchasing and value-based insurance design, must acknowledge that there is no universal consensus definition as to what constitutes value. To date, the consumer perspective has been underrepresented in discussions of value-based strategies such as pay for performance, capitated and bundled payments, and high-deductible health plans, which have been driven primarily by payers and providers. This article will discuss 3 elements of value from the perspective of families of children and youth with special health care needs: the role of families in the delivery of care, consumer perspectives on what constitutes quality for children and youth with special health care needs, and health care and health care financing literacy, decision-making, and costs. The undervalued contributions made by family members in the delivery and oversight of pediatric care and the importance of partnering with them to achieve the goals of the Triple Aim are stressed. The article closes with a discussion of recommendations for a future policy and research agenda related to advancing the integration of the consumer perspective into value-based purchasing and value-based insurance design.