Child and Adolescent Health and Health Care Quality Measuring What Matters (2011) / Chapter Skim
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3 Current Data Collection Methods and Sources
3 Current Data Collection Methods and Sources
Pages 67-90
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From page 67... ...
• Many health conditions and health care processes that are im portant to children appear in rates/numbers that are too small to be adequately represented in survey data sets. • Improving linkages among administrative record systems and between those systems and population-based survey data sets would facilitate comprehensive assessment of child and adoles cent health and health care quality.
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From page 68... ...
In many cases, data sets were designed for specific objectives without regard to how they fit within the larger landscape of child health measures. Furthermore, child and adolescent health data sets are not harmonized or coordinated with efforts that collect data about other aspects of development, education, or family and social contexts.
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From page 69... ...
The line between the two may not be entirely distinct; for example, a physician might be asked to provide data derived from the medical records she uses in her practice; thus the data collection is respon dent based, but the data are ultimately derived from administrative records. In the case of children, most respondent-based data are collected from proxy respondents (e.g., parents and caregivers)
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From page 70... ...
Respondents Health plan Consumer Assessment collection of race/ of Healthcare ethnicity data Providers and Systems (CAHPS) measures SOURCE: Committee on Pediatric Health and Health Care Quality Measures.
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From page 71... ...
and respondent based; however, many examples of health care data are population or respondent based, while many examples of health data are based on administrative records or service based. Furthermore, the same data on health might be regarded as a population measure or as a measure of quality (through sentinel care processes)
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From page 72... ...
. Federal Population Health Data Sets The committee developed Appendix F, a table briefly describing the major population health data sets that include information about child and adolescent health and health care services.
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From page 73... ...
The largest number of population health surveys, registries, and studies are administered by HHS. Other federal agencies collect child health data as part of their administration of information systems for other purposes, such as environmental quality (Environmental Protection Agency)
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From page 74... ...
. Administrative Data Sources In addition to the population health and longitudinal studies described above, data on child health and health care services can be derived from service-based records.
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From page 75... ...
infrastructure capacity and specifications, state collection methods, cross-state access to data, and the way various parameters are defined. For instance, the definition of "fully" immunized and the components of a newborn screening can vary by state; therefore, the data elements that are collected and tracked may vary and not be comparable (Ferris et al., 2001)
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From page 76... ...
Data Collection The use of administrative data to assess child health and health care quality is limited to some extent to certain dimensions of quality, such as access and some process measures. The combining of medical records and claims data through the development and operation of electronic health record (EHR)
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From page 77... ...
A lesson learned from the transition from individual to bundled payments for prenatal visits and delivery was that the requirement to collect and track the number of prenatal visits through administrative data no longer existed. Identification and Monitoring of Disparities As discussed in Chapter 2, it is crucial to identify and monitor health and health care equity issues among children and adolescents.
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From page 78... ...
. And neighborhood socioeconomic conditions may influence health behaviors and health status, yet generally are not included in most health studies.
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From page 79... ...
. Particular attention is needed to determine for what and for whom racial and ethnic characteristics are a proxy in terms of health care quality, access, and outcomes, although many studies over decades of research document that race and ethnicity are independently associated with multiple disparities in health and health care.
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From page 80... ...
One can then compare immunization rates in different states at that single age. Stratified reporting -- There might be several groups of interest for • a measure, each of which is homogeneous.
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From page 81... ...
Such a systemwide failure might arise, for example, from a lack of insurance coverage for needed medications, a lack of resources required to enable less educated patients to master complex treatment regimens, or unconscious discrimination against such patients. Indeed, such a pattern of inferior treatment within each hospital is not discernible in unadjusted hospital-level reports, which combine income groups.
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From page 82... ...
In many cases, secondary data, such as those collected for clinical, billing, research, or other purposes, may be used secondarily to assess health or health care quality. These data are often less well validated and may contain errors or formats that compromise data analysis; for some data types in some populations, however, secondary data are the only accessible source of the needed information.
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From page 83... ...
. Because the goal of medical data registries is often to support secondary data analysis, they feature well-characterized data collection methods and carefully constructed data fields that rely on controlled terminologies to support the aggregation of data in ways not always defined a priori.
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From page 84... ...
, which established a voluntary reporting system to resolve patient safety and health care quality issues: "To encourage the reporting and analysis of medical errors, PSQIA provides Federal privilege and confidentiality protections for patient safety information called patient safety work product. Patient safety work product includes information collected and created during the reporting and analysis of patient safety events" (HHS, 2011a)
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From page 85... ...
The adolescent population poses special data collection issues, particularly with regard to privacy and security concerns, as confidentiality is known to be a significant and necessary component when interviewing adolescents. Conflicts also exist at the state and local levels with respect to accessing Medicaid and vital statistics data; there is marked variation in the way states have interpreted recent guidance from the Centers for Medicare and Medicaid Services (CMS)
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From page 86... ...
. These surveys are designed to provide robust samples for analysis at the state level and a wealth of data on health conditions and functional status, insurance coverage, use of medical care and other services, and individual family health behaviors for children generally and for the more vulnerable subgroup of those with special needs.
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From page 87... ...
. Confusion as to the number of uninsured children arises in part because a range of different insurance concepts are relevant, in part because there is no proven method for collecting health insurance information, and in part because multiple surveys produce coverage estimates for children on an annual basis.
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From page 88... ...
. Not only is there disagreement about how many children lack health insurance coverage at a particular point in time nationally, but statelevel estimates vary across surveys as well (Blewett and Davern, 2006; Call et al., 2007)
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From page 89... ...
The committee believes a coordinated approach is needed to link these data sets and recommended measures to accomplish several objectives: prioritize the health domains that should inform the next genera • tion of quality improvement efforts; suggest strategies by which child health indicators could be devel • oped from existing child and adolescent data sources; and identify gaps that should be addressed through future research on • health measures or enhanced data collection efforts. Any effort to create such an integrated approach is challenged by multiple factors: a lack of consensus on the fundamental areas of health that are • important to monitor both for the general population of children and adolescents and for vulnerable groups; the absence of high-quality state-level data that make it possible to • monitor the health status of children and adolescents over time;
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From page 90... ...
Finally, the emergence of EHRs and personal health records (PHRs) has the potential to provide an important and novel source of primary data for assessing health and health care quality.
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