innovate to expand measurement methods, always evaluating measures from initial assessment to implementation, followed by feedback and support throughout their life in the field.
Documentation of the revision, replacement/expansion, and retirement of measures is available on a website (AHRQ, 2008) so that users of the measures have standard specifications but know that annual updates will reflect any new information .
STEP 3: CREATE NEW MEASURES AND DATA SOURCES IN
• AHRQ and CMS could coordinate these efforts with evidence-based preventive services and programs for children and adolescents that are supported by other federal agencies (such as the Healthy Start program supported by the Health Resources and Services Administration [HRSA] and selected public health screening efforts for sexually transmitted infections, underage drinking, and substance use).
• The HHS Data Council could routinely convene experts in public health, health care quality, and data sources associated with public and private health plans to identify opportunities for coordinated and integrated measures of preventive services for children and adolescents.
• AHRQ and CMS should convene state-based health plans to identify measures for key preventive health care strategies that could be incorporated into the core set of priority health care quality measures for children and adolescents.
• While the creation of consistent measures that can be used to assess health care quality for diverse populations deserves substantial attention, additional effort is necessary to develop a system that can foster the implementation and use of such measures. Recent legislative initiatives such as the Affordable Care Act and other federal efforts to support the development of health information technology offer substantial opportunities to foster the inclusion of children and adolescents in these efforts to build the next generation of data sources and data collection methods.
• Some aspects of these changes will likely support implementation of the approach proposed in this report aimed at improving quality measurement and outcomes for children. For example, increased emphasis on payment for outcomes and other value-based payment strategies will necessitate an increased investment in data collection and analysis, as well as the development of new quality metrics that correspond to the new service delivery structures, especially those that focus on preventive interventions for children and adolescents. Other aspects of these changes may impede progress toward the approach proposed by the committee. For example, increased use of bundled payments may reduce the amount or quality of administrative data available to measure care content and processes. These cross-currents reinforce the importance of measuring quality and outcomes for children for private payers, in addition to Medicaid and CHIP, and including measures at multiple levels of the health care system (e.g., the physician, plan, and accountable care organization [ACO] levels).
Measures Addressing Social and Behavioral Determinants of Health Using a Life-Course Perspective
While the need for improved measures of health care disparities and preventive services has already attracted attention, few data sources currently provide opportunities to incorporate new measures in such areas as the social and behavioral determinants of health or incorporate a life-course approach to measuring health functioning and health potential. Measures in these areas would facilitate important analyses and reporting on child and adolescent health and health care quality, and deserve special consideration given the dependent status of children and adolescents and the growing numbers who live in poor and low-income families. In generating the necessary measures and data sources in these areas, extensive collaboration among multiple public and private stakeholders will be necessary.
Recommendation 5: The Secretary of HHS should support interagency collaboration within HHS to develop measures, data sources, and reporting focused on relationships between the social determinants of health and the health and health care quality of children and adolescents.
Recommendation 6: The Secretary of HHS should encourage interagency collaboration within HHS to introduce a life-course perspective that
strengthens the capacity of existing data sources to measure health conditions, levels of functioning, and health influences (including access to and quality of care) for children and adolescents.
Specific actions that could be taken to implement these recommendations include the following:
• The HHS Data Council could support efforts to identify and reconcile sources of variation among different child health surveys and to build consensus on the reference age, racial/ethnic, and socioeconomic groups that merit consistent attention.
• The HHS Data Council could coordinate with HHS agencies to validate functional and developmental measures that can apply to chronic health conditions for children and adolescents in existing data sets. This effort would involve testing similar measures of functional status across different health conditions and populations to establish thresholds and categories and to highlight key dimensions of functional status, including calibration of parental/youth reporting and intervention strategies. Such efforts might also include measures of family care and intergenerational care in existing survey efforts.
• AHRQ and CMS could collaborate with other HHS agencies (particularly HRSA and the Centers for Disease Control and Prevention [CDC]) to conduct research on selected features of the families and neighborhoods of vulnerable populations of young people that exert significant influences on their health and health care quality (such as family structure, rates of mobility, and violence).
• AHRQ and CMS could adopt key measures for children and adolescents that capture data in such areas as household income, levels of parental education, and family structure.
Such measures already exist, for example, in population health databases such as the NSCH and NS-CSHCN, but have yet to be introduced in health care quality data sources.
• The effort to introduce social determinants into new and existing data sets in other federal agencies will require:
− identifying key aspects of socioeconomic status to be incorporated into data collection efforts,
− prioritizing other factors as standard elements in data collection efforts, and
− prioritizing the data sources to be modified to include these elements.
• Where feasible, AHRQ and CMS should introduce measures that can capture state-level policy and community characteristics. Such data will enable analysis of the variability and impact of coverage, eligibility, and payment policies, which may vary across multiple jurisdictions. This effort would benefit from additional investments in research design and survey instruments. Child and adolescent health status and health care quality may be directly influenced by the capacity of the health care resources within
communities. Eligibility for and use of available services may also be affected by state and national criteria and regulations and their implementation.
• The Federal Interagency Forum on Child and Family Statistics could develop coordinated strategies for sharing results from longitudinal studies of children and adolescents with those who design and analyze population health and administrative data sets for these populations. The gaps between these separate efforts prevent the discovery of key data elements or relationships emerging from longitudinal studies that could strengthen the quality of data sources that rely on other methods. Longitudinal data focus attention on the sequence of conditions, experiences, and resources that influence child health outcomes. Infant mortality rates in certain regions, for example, may result not from the scarcity or low quality of neonatal facilities but from the absence of high-quality prenatal care for pregnant women, especially those who have difficulty navigating health care services because of limited English proficiency, changes in employment or family
structure, or low health literacy. Placing more emphasis on achieving high-quality care in neonatal facilities may have a limited pay-off when the real problem resides in
behavioral, educational, and social factors, such as legal restrictions on public health care services for undocumented immigrants.
• The HHS Secretary could stimulate the development of registries and other data aggregation strategies for rare but chronic conditions that affect many children and adolescents (such as cystic fibrosis and sickle cell disease). Such strategies will provide a basis for analyzing practices and disparities in hospital and ambulatory care settings and identifying opportunities for quality improvement.
Recommendation 7: The Secretary of HHS should place priority on
interactions between HHS agencies and other federal agencies to strengthen the capacity to link data sources in areas related to behavioral health and the social determinants of health and health care quality.
In addition to the internal interagency collaboration with the U.S. Department of Health (as suggested in Recommendation 5 above), opportunities exist to foster integration of federal data sets that could link health and health care quality data to other child and adolescent outcomes, in areas such as education, employment, and public safety. These collaborative efforts would require interactions between HHS agencies and other federal departments. Specific actions that could be taken to implement this recommendation include the following:
• The HHS Data Council could work with other federal agencies (such as the Departments of Education and Justice) to identify opportunities to support state and local efforts that link health data for children and adolescents with school performance and community safety indicators, with special consideration of the challenges created by HIPAA and FERPA regulations.
• The Federal Interagency Forum on Child and Family Statistics could work with other federal agencies to develop strategies for integrating multiple data sets into a
comprehensive data system capable of monitoring influences on children’s health outcomes, including
− environmental indicators that inform analyses of interactions between health influences and child health conditions;
− geographic indicators that facilitate comparisons of health and nonhealth factors linked across population health survey(s), claims data, administrative records, EHRs, and other data sources; and
− encouragement for the inclusion of innovative measures in current population health surveys, such as diet, nutrition, and media exposure for children and adolescents, as well as other measures that respond to changing technologies and emerging health concerns.
STEP 4: IMPROVE DATA COLLECTION, REPORTING, AND