As surprising as it may seem, the U.S. lacks a unified system to measure quality of care and health status for children and adolescents, says a report entitled "Measuring What Matters" issued by the Institute of Medicine and National Research Council.
While numerous independent federal and state databases exist for this purpose, "the fragmentation of existing data sources impedes access to and timely use of the information they collectively provide," the groups said.
"The U.S. currently has no robust national information system that can provide timely, comprehensive, and valid and reliable indicators of health and healthcare quality for children and adolescents."
The report is the result of an 18-month investigation ordered by the U.S. Health and Human Services Agency in 2009 "to identify key advances in the development of pediatric health and healthcare quality measures, examine the capacity of existing federal data sets to support these measures, and consider related research activities focused on development of new measures to address current gaps."
The 266-page document makes 10 recommendations to improve the system for children and teens. They are:
1. The HHS Secretary should convene an interagency group to set quality goals within a life-course framework.
2. Annual reports to Congress should include specific pediatric measures of quality of care and should include standard definitions of race/ethnicity, socioeconomic status, and special healthcare needs. The goal is to identify and eliminate disparities. Information on primary language and parental English proficiency should be included.
3. The data system should entail creating a strategy for continuously improving the system, and identifying obsolete, unnecessary, or redundant measures as well as highlighting emerging candidates for new ones.