STEP 2: DEVELOP ANNUAL REPORTS AND STANDARDIZED
variations in the applicability of the survey items to people with different cultural or other social traits (Morales et al., 2001) . The absence of language diversity and the lack of rigorous
methodological work on the cross-cultural validity of multiple survey measures are notable shortcomings in existing health care quality data sets. These shortcomings are especially evident in evaluating the patient-centeredness component of care, when parents are asked to assess their child’s general status, their satisfaction with the services their child has received, and/or the extent to which their child’s health needs have been adequately addressed.
Assessment of children’s and adolescents’ health will benefit from efforts to (1) adopt standardized definitions and measures of these characteristics, (2) routinely include
socioeconomic information (minimally household income as an increment of the federal poverty level and educational attainment of parents), and (3) introduce data on language proficiency in existing data collection on the health and health care quality of children and adolescents. All these actions will be increasingly important in response to the growing poverty rates and increasing racial and ethnic heterogeneity of younger populations.
As noted earlier in this report, compared with U.S. adults, U.S. children and adolescents are disproportionately of nonwhite race/ethnicity, a fact of particular significance because poor and minority children have greater special health care needs than their nonpoor and white
counterparts (Flores, 2010) . Children and adolescents in these groups also are more frequently insured through public health plans. For example, more than 50 percent of African American and 48 percent of Latino children have public insurance such as Medicaid or CHIP (DeNavas-Walt et al., 2010). Thus the development of health indicators that can provide a basis for considering the health status of these groups in relationship to the general population of children and adolescents is a particularly urgent need.
Recommendation 2a: The Secretary of HHS should include specific measures of the health and health care quality of children and adolescents in annual reports to Congress as part of the Secretary’s national quality and
prevention strategy initiatives.
Recommendation 2b: These measures should include standardized
definitions of race/ethnicity, socioeconomic status, and special health care needs, with the goal of identifying and eliminating disparities in health and health care quality within a life-course framework. Identifying and reducing disparities in health and health care will require collecting data on
race/ethnicity, socioeconomic status, special health care needs, primary language spoken at home, and parental English proficiency for all children and adolescents.
Disparities in health and health care can be assessed by collecting data on
race/ethnicity, socioeconomic status, special health care needs, primary language spoken at home, and parental English proficiency for all children and adolescents. Specific actions that could be taken to implement this recommendation include the following:
• All HHS agencies, especially AHRQ and CMS, could assess their current capacity to identify the social and economic status of children and adolescents in national and
statewide data sources and take steps to introduce associated measures where they are not available.
• The Federal Interagency Forum on Child and Family Statistics could undertake a series of convening efforts to standardize definitions of race, ethnicity, special health care needs, and socioeconomic status in data sets pertaining to children and adolescents.
• The Federal Interagency Forum on Child and Family Statistics could work with other federal agencies to ensure that data on race/ethnicity, socioeconomic status, special health care needs, primary language spoken at home, and parental English proficiency are consistently collected in national and state surveys for all children and adolescents.
• The Secretary of HHS could stimulate a series of research initiatives within diverse agencies to encourage the creation of valid and reliable measures of the primary language spoken at home and parental English proficiency.
• The Secretary of HHS could establish priority areas for future measures of health care disparities, including disparities of health care access and utilization. Suggested areas include
− prenatal care and neonatal development (i.e., prematurity and birth weight),
− early childhood preventive care services and school readiness,
− transitions from adolescence to young adulthood,
− children with special health care needs (e.g., Down syndrome, cystic fibrosis),
− oral health,
− mental and behavioral health (including substance abuse), and
− health care access and utilization.
A Periodic Review Process
As national health and health care quality goals change over time, certain measures or data sources may become obsolete or unnecessary, new data sources and measurement methods may emerge, and gaps may develop in areas that are important to monitor but difficult to measure. A process needs to be in place for conducting routine reviews of the recommended core set of standardized measures to identify those that are no longer appropriate for monitoring, those that support timely and reliable assessments of health and health care quality, and gaps that could benefit from investments in research to stimulate measurement in areas that are difficult to assess or for populations that are difficult to reach.
Standardization can produce measures with the potential to aid in robust comparative assessments across jurisdictions and time periods, but it often comes at a cost if lessons learned through the application of such measures are not shared with those involved in the development and selection of measures (McDonald, 2008) . Standardization may result in the adoption of suboptimal measures at any given time based on the data sources available and the status of measure development. A periodic review process can help ensure that standardization does not result in the entrenchment of suboptimal measures (i.e., those that do not respond to changes in clinical evidence, understanding of the determinants of health, or measurement science). A periodic review process should include assessing each measure from the standardized core set to determine whether there is new evidence or information about the characteristics of the measure, its underlying data sources, or its application context (McDonald, 2008; Pancholi and Geppert, 2008) , as well as to consider how it could incorporate features of new similar measures. The results of this assessment would provide a basis to revise, replace, or retire measures when justified. The evidence base for measures and associated data elements applicable to children and adolescents is limited compared with that for the adult population (McDonald, 2009) . As a
result, new information is likely to emerge rapidly, making a continual learning environment for measures for children and adolescents even more important.
The committee tried to avoid wherever possible major new demands for state-level data collection beyond current capacities without identifying resources to support such efforts. In some cases, many states are already collecting, analyzing, and reporting important child health data, as noted in prior chapters. Strengthening these efforts while providing additional funding to those states without these capacities can make the improvement of national child and adolescent health data more feasible. States often are required to report important data in such areas as health events and service provision as a condition for receipt of federal funding. In such cases, standardization in data collection efforts (through the creation of common data elements) and in the format for reporting may be a feasible route to the goal of improving the quality of national statistics on child health and health care. In other cases, new surveys may be needed to
complement existing efforts. Ultimately, the national goal should be focused on developing useful measures of health and health care quality that address the priorities and needs of the users of the data.
The periodic review process provides an opportunity to address effective and valid data collection approaches and to ensure that respondents (especially parents and adolescents) are clear about the meaning and intent of the questions being asked. This is an important concern as parents may feel they need to put the best face on their children’s health status. In the case of adolescents, many parents may honestly not know about all the sources of health care that their children have accessed. Important validation efforts are therefore needed as new concepts in such areas as care coordination, prevention, and medical homes assume a larger role in health care delivery.
Recommendation 3: The Secretary of HHS should develop a strategy for continuous improvement of the system for collecting, analyzing, and reporting health and health care quality measures for children and adolescents. This strategy should include periodic review of those measures that are used, recommended, or required by the federal government.
The AHRQ work on quality indicators initiated under the Evidence-based Practice Center program is one example of this type of process that already exists at the federal level and could potentially be replicated for any standardized measures or measure sets. The development and maintenance of the AHRQ quality indicators are grounded in the methods of evidence-based medicine, applied to measurement. Initially, AHRQ and Healthcare Cost and Utilization Project (HCUP) partners requested an evidence project to refine the original HCUP quality indicators.
The motivation for this refinement was to meet the needs of those who were collecting the data and were working within their states to supply hospitals, legislators, policy makers, and the public at large with meaningful information based on the routinely collected administrative data sets available at the time.
As the program evolved, AHRQ initiated a support contract to ensure ongoing refinement of the indicators, including retirement of measures. Thus the guiding philosophy of the program is continuous quality improvement based on user experience and changes in medical evidence. In addition, the program includes expansions within domains and data sets initially covered, as well as expansions to new domains without ties to any particular data set to reflect new priorities in health care. Throughout the process, AHRQ and the quality indicator team have continued to
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