National Academies Press: OpenBook

Envisioning the National Health Care Quality Report (2001)

Chapter: Data Sources for the National Health Care Quality Report

« Previous: Selecting Measures for the National Health Care Quality Data Set
Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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4

Data Sources for the National Health Care Quality Report1

To be a reliable and authoritative source of information on the quality of health care in the United States, the National Health Care Quality Report (also referred to as the Quality Report) must draw from a set of data sources adequate to support measures on the components of health care quality—safety, effectiveness, “patient centeredness,” and timeliness. The set of sources must also be able to support consumer perspectives on health care needs, which include staying healthy, getting better, living with illness or disability, and coping with the end of life as they apply to each quality component.

This chapter presents the major criteria that the sources for the National Health Care Quality Data Set should meet, followed by a preliminary examination of how several leading public and private data sources compare on these criteria. As discussed, the Agency for Healthcare Research and Quality (AHRQ) should pursue parallel short-term and long-term strategies in defining and using the National Health Care Quality Data Set to report on health care quality. For the next decade or so, AHRQ will have to rely mostly on current approaches to collecting data. The Medical Expenditure Panel Survey (MEPS), coupled with a Consumer Assessment of Health Plans Survey (CAHPS) component, has the potential to support measures of patient centeredness and timeliness. To support measures of effectiveness and safety, AHRQ should draw from a combination of public and private data sources such as claims and other administrative data, sur-



1 Sections of this chapter are drawn from a paper on data sources for the National Health Care Quality Report commissioned by the committee from Marsha Gold (2000).

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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veys, and medical records. At the same time, AHRQ should encourage research and demonstration projects that will lead to the implementation of a robust health information infrastructure as is being assessed by the National Committee on Vital and Health Statistics (NCVHS) (U.S Department of Health and Human Services, 1999). Over the long term, fulfilling the committee's vision of a comprehensive Quality Report will be facilitated by the development of electronic clinical data systems integrated with the care process itself. In addition, the data system should permit the aggregation of individual records for the purpose of examining quality of care overall and for specific population subgroups, as well as disaggregation for the purpose of examining reasons behind potential disparities. These kind of data will be available only if significant progress is made toward development of a health information infrastructure. It is imperative that efforts be made to encourage electronic access to standardized clinical data, including patient history and diagnosis, medication and ancillary service orders and results, procedures performed, and patient outcomes, in both inpatient and outpatient settings. Means of capturing community-level information on the experience of care (most commonly through surveys) will also be necessary.

RECOMMENDATIONS

RECOMMENDATION 7: Potential data sources for the National Health Care Quality Data Set should be assessed according to the following criteria: credibility and validity of the data, national scope and potential to provide state-level detail, availability and consistency of the data over time and across sources, timeliness of the data, ability to support population subgroup and condition-specific analyses, and public accessibility of the data. In addition, in order to support the framework, the ensemble of data sources defined for the National Health Care Quality Data Set should be comprehensive.

The data sources that are intended to support the long-term goal of a National Health Care Quality Data Set must meet certain high standards to support analysis of the state of health care quality in the United States. Although these criteria are not exhaustive, they do include the essential ideal features that should characterize data sources for the Quality Report in the future. When current data collection efforts do not fulfill these criteria, AHRQ should explore ways to enhance existent data sources and establish new data collection and reporting systems that exhibit these characteristics, in collaboration with the appropriate entities in the public and private sectors.

RECOMMENDATION 8: The Agency for Healthcare Research and Quality will have to draw on a mosaic of public and private

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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data sources for the National Health Care Quality Data Set. Existent data sources will have to be complemented by the development of new ones in order to address all of the aspects included in the proposed framework and resulting measure set. Over the coming decade, the evolution of a comprehensive health information infrastructure including standardized, electronic clinical data systems will greatly facilitate the definition of an integrated and comprehensive data set for the Quality Report.

Elsewhere, the committee has recommended the definition of a wideranging set of measures for the National Health Care Quality Data Set based on the proposed framework and specified criteria (see Recommendations 1, 2 and 4.) To create the data set, the Agency for Healthcare Research and Quality will have to rely on a number of data sources. A formal and exhaustive review of data sources based on the suggested criteria (see Recommendation 7) will be needed. This process will be used to determine how presently available data sources can best be used and which others will have to be developed (particularly for the framework elements of safety and coping with the end of life).

A preliminary and limited evaluation of several candidate data sources suggests that a combination of MEPS and CAHPS may have the best potential to supply data for measures of patient centeredness and aspects of timeliness. However, the CAHPS component presently planned for MEPS will have to include additional questions in order to meet the data requirements for these two components of quality and related consumer perspectives on health care needs. To assess effectiveness and safety and relevant health care needs, a combination of public and private data sources should be used, including MEPS, other population surveys, claims and other administrative data, medical record abstraction, and new data sources that will have to be developed.

Administrative data, such as Medicare claims, represent one of the most practical and cost-effective data sources on selected components of health care quality available today. Although they may have important limitations, they can be used to identify areas that require closer study through other means such as surveys and medical record abstraction.

Whenever possible, AHRQ should pursue data strategies that encourage the collection of standardized clinical data in electronic form as a part of the care process. Although there are many clinical and administrative reasons for using this type of information, in the long run it will also provide the best data on components of quality and consumer health care needs allowing for a more textured picture of quality.

RECOMMENDATION 9: The data for the National Health Care Quality Report should be both nationally representative and, in the long term, reportable at the state level.

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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By measuring health care quality at the national and state levels, the National Health Care Quality Report would provide benchmarks to judge how well health care delivery systems are performing at the state level in comparison to the nation as a whole. The ability to examine certain quality measures across states would substantially enhance the policy relevance, visibility, and usefulness of the report. In some cases, the available data will yield estimates that may be fairly precise for larger states, but not as precise for smaller states. In such instances, data for smaller states might be aggregated over several years before being reported. States should also be allowed to supplement the sample size called for by federal reporting requirements and fund additional data collection efforts to produce more detailed estimates.

Local-level identifiers such as zip codes can be used to examine specific subpopulations when needed. Since health care is inherently a local phenomenon, further detail on the quality of care for geographic units smaller than states is usually required to address potential problems at the provider and organizational levels. However, this level of detail should generally correspond to other regional or specialized reports since the purpose of the National Health Care Quality Report is to examine the quality of care provided by the system as a whole, not by individual providers, localities, or health plans.

DATA SOURCE SELECTION CRITERIA

It is not surprising that national health care quality measurement demands much from potential data sources, given the fact that quality of care is a complex topic. The six criteria listed in Box 4.1 help to specify and clarify what the data source needs are. These represent the combination of characteristics of an ideal data source. It is unlikely that every potential data source will meet all of them, and a data source does not have to do so in order to qualify for the National Health Care Quality Data Set. The criteria are listed in Box 4.1 in approximate order of importance.

BOX 4.1 Desirable Attributes for Sources for the National Health Care Quality Data Set

    1. Credibility and validity of the data

    2. National scope and potential to provide state-level detail

    3. Availability and consistency of the data over time and across sources

    4. Timeliness of the data

    5. Ability to support subgroup- and condition-specific analyses

    6. Public accessibility of the data

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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Credibility and Validity of the Data

The value of the Quality Report will largely reflect the credibility of the measures and the corresponding data sources. Two important determinants of credibility are the underlying validity and reliability of the data. This means that sources that meet established professional standards for data are likely to be more credible than those that do not. Factors that should be considered in evaluating the quality of potential sources of data include their prior use in research, the availability of good documentation, and review by researchers and others of their suitability for use in the Quality Report.

National Scope and Potential to Provide State-Level Detail

Data for the Quality Report should cover the nation and should be collected using methods that limit the bias that would otherwise exist if particular populations or geographical locales were systematically excluded or underrepresented in the sample. This means that data available nationally or from all states are more desirable than those covering only a subset of states. In addition, it is recommended that quality data be reportable at the individual state level in the long term; therefore, data sources that provide this level of detail—or have the potential to do so—should be preferred. Also, data sources (in particular, those based on population surveys) that cover all of the people in the United States are better than those that leave out subsets of the population (for example, the homeless, the uninsured, or immigrants) or particular health care settings (for example, nursing homes). Such omissions present problems for the representativeness of the data, especially when sources of comparable data for those excluded do not exist.

In general, it is desirable to collect national information that is sufficiently detailed to support estimates for states and for subgroups in states that are defined by demographic variables (such as race or income) and health conditions. However, the sample sizes required to support state estimates are obviously much larger than those required to support a single national estimate or even a national estimate together with a few broad regional or subgroup comparisons. For example, a common sample size for a survey might be 1,000 respondents for each reportable domain; a measure that might feasibly be collected by a national survey could be very expensive at the state level. Even if a survey is large enough to support estimates at the state level for some general measures, it might not do so for measures that apply only to subpopulations such as those with specific health care needs. Therefore, states should be given the opportunity to supplement sample size to produce reliable state-level estimates. Although the ability to collect state-level estimates is preferable, a measure of an important aspect of health care should not be rejected because it is not available at the state level.

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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Availability and Consistency of the Data Over Time and Across Sources

The Quality Report must track the quality of health care and identify areas for improvement over time. Data sources that are collected on an ongoing basis are more useful for this purpose than those that are produced occasionally or at irregular intervals. Data sources based on similarly defined populations are preferable because they can be used to construct uniform denominators across measures and over time that will allow for valid comparisons. Consistency can be fostered by selecting or developing data sources where data are gathered in a standardized fashion based on uniform definitions and denominators. The National Committee on Vital and Health Statistics is addressing many of these key health data issues (U.S. Department of Health and Human Services, 1999).

As a practical matter, however, the way data elements are defined may change or be improved over time, potentially enriching the content of the Quality Report but jeopardizing the ability to compare quality from one period to the next. Whenever possible, maintaining the continuity of data sources over time and across sources ought to be an important objective. One can reconcile the need for available data, the value of improved data, and the need for consistent data over time by giving preference to data sources in which changes are well documented, systematically introduced, and thoughtfully made. Although stable and consistent data sources are ideal and needed to track changes in quality over time, cross-sectional data from occasional data sources are also important. They will be useful for examining specific topics and, in the short term, may be the only way to obtain information for some of the measures.

Timeliness of the Data

Data available on a reasonably timely basis should be favored over data for which the lag between collection and availability is substantial. A reasonably timely basis can amount to as much as a three-year time lag, but a year or less would be better since the data would be more valuable to policy makers in assessing the effects of innovations.2 Further, more timely data provide feedback on the current system, rather than on the system as it existed several years ago. The report should also include measures that reflect any recent systemwide interventions for quality improvement that require assessment.



2 This criterion applies to the data source as a whole and not to individual measures or indicators. Some data sources will include measures for which yearly data collection is impractical or unnecessary. However, the data source should preferably be available every year even if all the data elements are not updated yearly.

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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Ability to Support Subgroup- and Condition-Specific Analyses

Because equity in the quality of care for different population groups and quality of care for specific health conditions should be examined in the Quality Report, data sources must allow the definition of consistent estimates for various subgroups of the population such as children, the poor, minorities, the uninsured, and other vulnerable populations, as well as people with specific health conditions. In many cases, it will be necessary to oversample population subgroups of interest in order to obtain reliable estimates. This makes both the content and the sample design (if relevant) of data sources important to an assessment of data quality. For example, data sources that capture sociodemographic characteristics and specific health conditions and that include adequate numbers of these subpopulations should be stronger contenders for inclusion than those that do not. Similarly, individual-level or discrete data that can be used to generate diverse estimates are more suitable than sources that provide only aggregate measures.

Public Accessibility of the Data

As mentioned in the discussion of credibility, data for the Quality Report should be widely accepted and respected. One way to achieve this is to focus on data in the public domain, either because they are drawn from a public data source or because they are drawn from a private data source that is routinely available to public agencies. Some data from private sources may be made available to public agencies under strict procedures to ensure patient or respondent confidentiality. In some instances, organizational confidentiality may be ensured (for example, hospital reports on adverse drug events), even though state estimates may be made public. Regardless of the source, there should be a reasonable guarantee of availability to the public and of predictability in the cost of acquiring the data for the report. In some cases, part or all of the data will be made available only to researchers. This is also acceptable but public accessibility is more desirable. For example, AHRQ has recently opened the CCFS Data Center, which allows researchers access to MEPS data files not available for public use (Agency for Healthcare Research and Quality, 2001).

POTENTIAL DATA SOURCES

The criteria for discrete data sources and the requirement of comprehensiveness for the entire set of data sources can be used to assess candidate sources for the report. This holds true for both the short and the long term. As noted, in the short term, a mosaic of data sources will make up the National Health Care Quality Data Set. The criteria will help to rule out some sources and to clarify the strengths and weaknesses of others. In addition, the criteria indi-

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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cate how the data sources used initially can be improved to provide better, more complete information. In the long term, however, the development of electronic clinical data systems will support data that more adequately meet the criteria of comprehensiveness, as well as national- and state-level coverage, availability and consistency over time, timeliness, support for subgroup- and condition-specific analyses, and public accessibility.

The following is a description of potential public and private data sources that can be used in the National Health Care Quality Data Set in the next several years. It should be noted that the distinction between public and private data sources is not always a clear one. Although data sources may be produced by public entities such as federal and state governments, this does not necessarily mean that they can be accessed easily and used without restriction. For example, those that contain information on health care for individuals generate confidentiality concerns that can strictly limit their use. Private data sources run the gamut from those that have minor restrictions to those that are proprietary. Generally, proprietary sources can be used only for a fee or by meeting other requirements such as organizational membership.

Public Data Sources

There are several kinds of public data sources, including population-based health surveys and payer and provider data. Most of these data sources can provide only national or regional estimates. Some, however, include state-level detail. This section contains a brief overview of some of the public data sources that could be used in the National Health Care Quality Data Set. This is followed by a discussion of how these sources fulfill the criteria proposed by the committee and how they cover specific components of quality. They are listed alphabetically.

Behavioral Risk Factor Surveillance Survey

The Behavioral Risk Factor Surveillance Survey (BRFSS) is a state-administered survey. It is designed for telephone administration, and it has core sections and optional modules. Topics for the core section include health status, health care access, demographics, particular diseases, and risk factors. Topics for the optional module include health care coverage and utilization, health care satisfaction, preventive behavior and practices, and other diseases and risk factors. In addition, states can add their own questions on matters of particular local interest, as Oklahoma did when it examined stress and other health issues following the 1995 bombing in Oklahoma City. Sample size varies across states and ranges from 1,800 to 7,500 people per year depending on the state (Centers for Disease Control and Prevention, 2000a; Powell-Griner, 2000).

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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Consumer Assessment of Health Plans Survey

The Consumer Assessment of Health Plans Survey is a survey and reporting tool. CAHPS is actually a family of surveys and consists of several core questionnaires that can be combined with supplements on special topics (Agency for Healthcare Research and Quality, 2000a). The core questionnaires include the adult core questionnaire, the Medicaid managed care questionnaire, the child core questionnaire, the child Medicaid managed care questionnaire, and the Medicare managed care questionnaire. Supplements include those on mental health care, prescription medicine, and communication with providers.

CAHPS is used by more than 20 states, 10 employer groups, the National Committee on Quality Assurance (NCQA), the Agency for Healthcare Research and Quality, the Health Care Financing Administration (HCFA) for Medicare, the Federal Employees Health Benefits Program (FEHBP), the Ford Motor Company, and a number of health plans (Agency for Healthcare Research and Quality, 2000a). Only recently have selected items in CAHPS been administered by AHRQ within MEPS.

The National CAHPS Benchmarking Database, funded by AHRQ, publishes CAHPS data yearly in each of the three major sectors (commercial, Medicare, and Medicaid) (Agency for Healthcare Research and Quality, 2000b). CAHPS data are also released annually by NCQA, by HCFA for Medicare, and by state Medicaid programs.

Healthcare Cost and Utilization Project

The Healthcare Cost and Utilization Project (HCUP) is a family of databases created from data in the Nationwide Inpatient Sample (NIS) and from the State Inpatient Databases (SID). The Nationwide Inpatient Sample is based on a national sample of more than 1,000 hospitals. State Inpatient Databases consist of inpatient data collected voluntarily by community hospitals for use in HCUP and now cover 31 states (Agency for Healthcare Research and Quality, 2000c).

HCUP quality indicators (QIs) are a set of 33 clinical performance measures drawn from HCUP databases. The measures concern the quality of inpatient care and access to primary care. The measure set is currently being revised and expanded (Agency for Healthcare Research and Quality, 2000c).

HCUP QIs involve three dimensions of care. First, there are adverse hospital outcomes, which include inpatient mortality rates among low-risk patients who have common elective procedures and complication rates related to events that occur during hospitalization. The second dimension is potentially inappropriate use of hospital procedures, which include utilization rates for procedures identified as overused or underused. Third, there are potentially avoidable hospital admissions, which are indirect measures of access to—and appropriateness of—primary care (Agency for Healthcare Research and Quality, 2000c).

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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Medical Expenditure Panel Survey

The Medical Expenditure Panel Survey is a nationally representative survey of health care utilization, spending, insurance coverage, and other data elements. It applies mainly to noninstitutionalized civilians, although there is also a MEPS survey of nursing home residents. Since 1997, MEPS has been conducted annually, with the National Health Interview Survey (NHIS) national core sample as the sampling frame. It contains cross-sectional and longitudinal data.

The main component of MEPS is a household survey of noninstitutionalized civilians (roughly 10,000 families and 24,000 individuals) that yields data at the household and individual levels. It can be used to produce estimates at the national and regional levels, but not at the state level. It asks respondents about their health conditions, status, access to care, use of various care settings, prescribed and over-the-counter medicines, and medical expenses for the prior two years (Agency for Healthcare Research and Quality, 2000d). Other core components are followback surveys of insurers and providers, including physicians, hospitals, and pharmacies. Followback surveys are used to validate and supplement information provided in the household component and to support analyses of individual behavior and choices (Agency for Healthcare Research and Quality, 2000e).

The Healthcare Research and Quality Act of 1999 calls for MEPS to be expanded in several ways to improve its capacity as a major data source on the quality of care. These include the collection of data needed “to study the relationships between health care quality, outcomes, access, use, and cost, measure changes over time, and monitor the overall national impact of Federal and State policy changes on health care,” as well as “the quality of care and patient outcomes for frequently occurring clinical conditions for a nationally representative sample of the population including rural residents” (Healthcare Research and Quality Act, 1999).

In response to the Healthcare Research and Quality Act, AHRQ is planning changes for MEPS that may include expanding the survey's coverage of such topics as preventive care and the treatment of particular medical conditions. AHRQ is also planning to incorporate some measures of patient experience with care borrowed from CAHPS, including consumer satisfaction, patient centeredness, and timeliness (Lefkowitz, 2000).

Medicare Claims or Payer Data

HCFA has developed extensive databases that feature claims-based information from intermediaries and carriers on inpatient and outpatient services for which it has paid under coverage provided by Medicare Part A (called hospital insurance) and Part B (called medical insurance) (Health Care Financing Administration, 2000b). As of 1998, about 39 million people, or 95 percent of those

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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65 years of age or older were covered by Medicare Part A, Medicare Part B, or both (Health Care Financing Administration, 1999).

Claims data can be linked to enrollment data to provide information on providers, up to nine patient diagnoses during an inpatient stay, medical treatment, some medical services, demographics, and mortality (Eggers, 2000; Health Care Financing Administration, 2000a). Such data could be used to target surveys of patients with specific conditions or treatments to complete the picture of their care. They have been used to make risk-adjusted outcome comparisons among states (Peterson et al., 1998) and to estimate the rate of complications following procedures (Lu-Yao et al., 1994).

Claims data, however, omit care that is not covered by Medicare Parts A or B. Claims data do not reflect care that is paid by supplemental medical coverage, nor do they reflect care in the form of laboratory services, even if covered by Medicare. These data provide information on insurance claims for the approximately 85 percent of beneficiaries who are enrolled in fee-for-service Medicare, but not for the remaining beneficiaries who are enrolled in Medicare managed care (Eggers, 2000; Hannan et al., 1997).

Medicare Current Beneficiary Survey

The Medicare Current Beneficiary Survey (MCBS) is an ongoing longitudinal panel survey of 12,000 Medicare beneficiaries, drawn from Medicare enrollment files. It includes the institutionalized and noninstitutionalized Medicare population. Data collection covers a three-year period. The survey includes information on health care utilization, expenditures, insurance coverage, and health status, resulting in measures similar in some ways to those in MEPS. Medicare links survey data with claims data from Medicare files, but to date, the linked data have included only beneficiaries in fee-for-service arrangements. This design has complicated efforts to develop common measures of utilization by type of plan (Health Care Financing Administration, 2000a).

Medicare Quality Data

HCFA collects a range of other data that specifically support quality measurement, such as the Medicare Health Plan Employer Data and Information Set/Consumer Assessment of Health Plans Survey (HEDIS/CAHPS). As of 2000, most Medicare managed care organizations must use performance measures based on HEDIS, which includes the Medicare Health Outcomes Survey (HOS). Medicare CAHPS also provides information on consumer experience with Medicare managed care plans. Examples of CAHPS measures include those on effectiveness of care for specific conditions, access to or availability of care, and utilization of services. Beginning in 2001, health plans will report data in different ways. As in previous years, most will continue to report on the area

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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they contract with HCFA to cover. Five states—California, Florida, New York, Ohio, and Texas—will each be divided into two geographical units, and plans will issue reports based on these units. Plans in states that have more than 5,000 members and that operate in both units will issue two reports (Elstein, 2000).

In addition, beginning in 2000, HCFA collected data for a CAHPS survey aimed at those in Medicare fee-for-service insurance. Reporting is scheduled to begin in 2001. Initially, information will be reported on 50 states, the District of Columbia, and Puerto Rico. Findings are based on a survey of 168,000 people (Sekscenski, 2000).

National Ambulatory Medical Care Survey and National Hospital Ambulatory Medical Care Survey

The main surveys on ambulatory care are the National Ambulatory Medical Care Survey (NAMCS), which collects data on a sample of visits to physicians' offices, and the related National Hospital Ambulatory Medical Care Survey (NHAMCS), which collects data on a sample of visits to hospital outpatient and emergency departments. Both surveys collect data on patient characteristics and care, including diagnostic and screening services, diagnoses, procedures, therapeutic services, medications, disposition, and causes of injury where applicable. The surveys can be used to produce national estimates. They cannot be used to produce meaningful state-level estimates (National Center for Health Statistics, 2000a).

National Health and Nutrition Examination Survey

The National Health and Nutrition Examination Survey (NHANES) uses a combination of interviews, direct physical examinations, and medical tests and procedures to collect information on a nationally representative sample of the U.S. population. Sample size consists of about 5,000 people per year, including children and adults. NHANES focuses on health status rather than health care services. The survey allows monitoring of national trends in diabetes, nutritional status, osteoporosis, physical activity, and respiratory health and disease. Since 1999, NHANES has been conducted continuously and annually, replacing earlier versions that were conducted over several years with larger samples. It can be linked to the NHIS and, beginning in 2001, to the U.S. Department of Agriculture's Continuing Survey of Food Intakes by Individuals (CSFII) (National Center for Health Statistics, 2000b).

National Health Interview Survey

The National Health Interview Survey is an annual cross-sectional survey of more than 40,000 households that include more than 100,000 people, selected to

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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represent the civilian noninstitutionalized population of the United States. The NHIS is the main source of national data on the incidence of acute illness, prevalence of chronic conditions and impairments, extent of disability, and use of health services. Questions about preventive services have been expanded and asked more routinely in recent years. The NHIS includes basic information collected annually, other items collected on a periodic basis, and topical items collected on a one-time basis as special supplements (National Center for Health Statistics, 2000c).

National Immunization Survey and State and Local Area Integrated Telephone Survey

Unlike most federal surveys, the National Immunization Survey (NIS) and the State and Local Area Integrated Telephone Survey (SLAITS) are conducted by telephone. NIS is a survey of both households and health care providers. For NIS, immunization data are obtained on children 19 to 35 months of age, who are located in 78 nonoverlapping geographic units across the nation. The survey includes telephone screening of 800,000 households annually to identify 32,000 households with children of the target age. The survey also collects data from 30,000 providers who have administered immunizations to survey participants. SLAITS is a special-purpose survey that includes questions from NIS and provides state-based estimates of health insurance coverage, utilization, and access. It also provides feedback on various policies and programs (for example, the effect of welfare reform). In addition, SLAITS includes special surveys of families with young children, children with special needs, and a pilot on testing for human immunodeficiency virus (HIV) and sexually transmitted disease (STD) risk behaviors. Measures of the quality of care for disabled children are being developed in collaboration with staff from the Foundation for Accountability (FACCT) (Blumberg, 2000; Centers for Disease Control and Prevention 2000b; National Center for Health Statistics, 2000d).

National Vital Statistics System

As its name indicates, the National Vital Statistics System (NVSS) records all vital statistics including births and deaths (National Center for Health Statistics, 1999, 2000e). As such, it is the most complete data source on infant mortality and general mortality by cause of death and several population characteristics. It has the potential to provide nationwide, continuous, and uniform baseline data on adverse health outcomes, complications (including drug complications), and misadventures to patients as a result of or during surgical and medical care when these are part of the International Classification of Diseases, particularly the External Causes of Death Codes, or E Codes (National Center for Health Statistics, 1995). The data can be classified by specific population

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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subgroups defined by age, race, Hispanic origin, sex, place of birth, and place of occurrence, among others. Several specific programs and surveys are associated with the NVSS. These include the Linked Birth and Infant Death Data Set, the National Maternal and Infant Health Survey, the National Mortality Followback Survey, the National Survey of Family Growth, and the National Death Index. Each of these provides more detail regarding recorded births and deaths, including information on access to prenatal care, behavioral risk factors, maternal characteristics, and others. The main limitation of these associated sources is that they do not have a defined periodicity, so it would not be possible to use them to regularly examine trends.

Surveillance, Epidemiology, and End Results Program

The Surveillance, Epidemiology, and End Resuks (SEER) Program of the National Cancer Institute is one of the nation's two main national cancer registries (for information on the other registry, see a description of the National Cancer Data Base below). Cancer registries collect data on such items as cancer type, stage of cancer at diagnosis, course of treatment, and patient characteristics (Institute of Medicine and National Research Council, 1999). SEER is the only registry that contains data on the stage of cancer when diagnosed and the rates of survival for a stage. SEER began to ascertain cases in 1971. Currently, it collects data on patients drawn from five states, several metropolitan areas, and other localities, who make up 14 percent of the population. Compared to the population of the United States as a whole, the sample is more urban, has a greater proportion of the foreign born, but has similar levels of poverty and education (Hankey et al., 1999; Institute of Medicine and National Research Council, 2000).

Private Data Sources

As mentioned in Chapter 1, the committee held a call for measures for the National Health Care Quality Report and requested submissions from the private sector.3 The 138 measures submitted covered most of the components of quality and consumer perspectives on health care needs set forth in the framework. However, many of the measures were not part of regular data collection efforts (see Appendix C for the list of measures submitted).

There are many kinds of private data sources, including private insurance plans, accrediting organizations, providers, and vendors. The following is a brief overview of some that could be used for the National Health Care Quality Data



3 AHRQ planned and held a subsequent call for measures for the Quality Report among federal agencies after the committee had concluded its deliberations.

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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Set in the short term. In the long term, electronic data systems in combination with selected surveys would be preferred, as has been discussed.

National Cancer Data Base

In addition to the National Cancer Institute's SEER Program (see above), the National Cancer Data Base (NCDB) is one of the nation's two main cancer registries. It is sponsored by the American College of Surgeons' Commission on Cancer and the American Cancer Society. Initiated in 1989, it contains data reported by 1,600 hospitals, with the number of reporting hospitals slated for expansion. Hospitals report all new cases seen in a data year, which include 600,000 new cases of cancer annually, or 58 percent of all new cases in the nation. Patient background, cancer characteristics, first course of treatment, and treatment follow-up are among the items of information collected. Hospitals that have a computerized cancer registry seem more likely to report to the NCDB (Institute of Medicine and National Research Council, 2000).

ORYX

The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) is an independent, nonprofit entity that accredits nearly 19,000 health care organizations and programs (Joint Commission on Accreditation of Healthcare Organizations, 2000a). To advance the use of quality improvement measures in the accreditation process, JCAHO launched the ORYX initiative in 1997. It is currently being implemented in the accreditation process for hospital, long-term care, home care, network, laboratory, and behavioral health care organizations. JCAHO also plans to implement it for ambulatory care and long-term care pharmacy organizations.

In 2000, JCAHO's board approved a set of 25 common measures for ORYX distributed across five core measurement sets: acute myocardial infarction (AMI), heart disease, surgical procedures and complications, pregnancy and related conditions, and community-acquired pneumonia. Hospitals will be required to select some of these common core measures for data collection activity starting in January 2002 and to submit the initial information no later than July 2002. The measurement sets were developed by expert advisory panels, with extensive input from interested parties. The initial set of ORYX measures on pneumonia, AMI, and heart failure includes 17 that are from the sixth contract cycle for HCFA peer review organizations (PROs) (see section that follows). These measures will be refined to reflect the fact that patient data will not be restricted to the Medicare population. JCAHO initially focused on acute care and the five conditions listed here, but it plans to expand ORYX to other conditions and to add measures relevant to long-term care. However, JCAHO will limit the frequency of change and the ultimate size of the measurement (Joint

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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Commission on Accreditation of Healthcare Organizations, 2000b). Eventually, JCAHO plans to publicly release comparative information on organizational performance that will include risk-adjusted core measurement data. Raw data on organizations will be kept confidential (Schyve, 2000).

Peer Review Organization Data

HCFA collects a range of quality care data through its peer review organizations. PROs are private organizations that contract with HCFA to provide a variety of services, including evaluation of the quality of medical services provided to Medicare beneficiaries and funded by Medicare. Under their current contract with HCFA (the sixth contract cycle, which includes the sixth scope of work) to provide services to Medicare, PROs monitor certain clinical practices, including six condition-related services relevant to health care quality: care for AMI, heart failure, stroke or atrial fibrillation, pneumonia or influenza, breast cancer, and diabetes (Elstein, 2000).

Quality Compass

Quality Compass is a database on managed care information produced by the National Committee on Quality Assurance. As explained in Chapter 1, the NCQA is a private, nonprofit organization that accredits managed care organizations. For accreditation, it requires managed care organizations to report on selected measures from HEDIS including consumer survey results. By 2001, all managed care organizations will be required to report measurement results publicly as a condition of accreditation (National Committee for Quality Assurance, 2000).

Quality Compass contains the data supporting HEDIS, which features more than 50 measures across eight domains of care: effectiveness of care, access to or availability of care, satisfaction with the experience of care, health plan stability, use of services, cost of care, informed health care choices, and health plan descriptive information. In addition, Quality Compass contains the data for HEDIS/CAHPS, which features measures drawn from adult CAHPS measures regarding consumer satisfaction and experience with health care, including aspects of timeliness and patient centeredness (Schilling, 2000).

EVALUATING DATA SOURCES FOR THE NATIONAL HEALTH CARE QUALITY DATA SET IN THE SHORT TERM

Applying the criteria described at the beginning of the chapter to individual public and private data sources helps to clarify their relative advantages and disadvantages. However, choosing a set of data sources for the Quality Report for the short term will involve more than applying the criteria and evaluating which

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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sources meet more criteria than others. Not only can the criteria be weighted differently, but there are also many practical considerations, such as a sponsoring organization's capacity to field a suitable survey and adequate budgetary support for necessary changes. It should be noted that this evaluation is only preliminary. AHRQ and other agencies and offices in the Department of Health and Human Services (DHHS) are better suited to perform the kind of thorough analysis that this activity requires.4

Table 4.1 presents an evaluation of some major public data sources by the data source selection criteria described above. Because all of the public and private data sources analyzed here are reasonably credible and valid, evaluation of these criteria is not included in the table. Although comprehensiveness is a criterion that the set of data sources taken together should meet, Table 4.1 contains an evaluation of the comprehensiveness of each individual data source, with respect to the components of quality and consumer perspectives on health care needs covered by each data source.

As Table 4.1 shows, public data sources are similar in the extent to which they meet many of the criteria. However, they differ in other ways. For example, whereas MEPS and NHIS use nationally representative samples, HCUP's State Inpatient Databases currently draw from a nonrandom sample of 31 states (Agency for Healthcare Research and Quality, 2000c). MCBS and Medicare claims data concern only beneficiaries in fee-for-service Medicare and exclude the approximately 15 percent of beneficiaries enrolled in managed care plans (Health Care Financing Administration, 2000a).

Public data sources also differ in the comprehensiveness of coverage regarding components of quality and consumer perspectives on health care needs (discussed later in this chapter). MEPS contains the broadest coverage with respect to these two components of quality. In addition, it includes information that allows analysis of equity, but certain groups may have to be oversampled. Since it shares a sampling frame with NHIS and NHANES, it can be linked to them to provide other needed data (Agency for Healthcare Research and Quality, 2000f). That MEPS compares favorably with other data sources is due in part to enhancements to the survey that have been or will be implemented by AHRQ in response to the Healthcare Research and Quality Act (Lefkowitz, 2000).

Table 4.2 presents an evaluation of major private data sources by the same criteria used for public sources. Again, because all of the data sources are reasonably credible and valid, evaluation of these criteria is not included. In addition, this table evaluates the coverage or comprehensiveness of a single data source with respect to measures of health care quality components and consumer perspectives on health care needs.



4 See Cohen (2000) and Arispe (2000) for other data source analyses.

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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TABLE 4.1 Preliminary Evaluation of Public Data Sources on Health Care Quality

Comprehensiveness

     

Scope

   

Other Data Source Criteria

     

Type and Name of Source

Condition-Specific Data

Links to Clinical Information

Components of Health Care Qualitya

Consumer Perspectives on Health Care Needsb

National Coverage

State or Regional Coverage

Released Annually

Timely Availability of Data

Consistency of Content over Time

Supports Population Sub-Group Analysis

Publicly Accessible Data

BRFSSc

No

No

2, 4

1

Yes

Yes

Yes

5 months

Yes

No

Yes

CAHPSd

No

No

3, 4

1–3

Yes

Yes

Yes

6 months

Yes

Yes

Yes

HCUP

Yes

Yes

2–4

2, 3

No

No

Yes

2 years

Yes

Yes

Yes

MCBSf

Yese

Yese

2–4

1–3

Yes

No

Yes

1 year

Yes

Yes

Yes

Medicare Claims Dataf

Yes

Yes

2, 4

1–4

Yes

Yes

Yes

6–18 months

Yes

Yes

Yes

MEPSg

Yes

Noh

2, 4

1–4

Yes

No

Yes

18 months

Yes

Yes

Yes

NAMCS/NHAMCS

Yes

No

2

1–3

Yes

No

Yes

1 year

Yes

Yes

Yes

NHANES

Yes

No

4

1–3

Yes

No

Yes

3 years

Yes

Yes

Yes

NHIS

No

Yese

3, 4

1–3

Yes

Yese

Yes

18 months

Yese

Yes

Yes

NIS/SLAITS

No

No

2, 4

1, 2

Yes

No

No

6 months

No

Yes

Yes

NVSS

Yes

Yese

1, 2

1–3

Yes

Yes

Yes

Continuous

Yes

Yes

Yes

SEERf

Yes

Yes

No

No

No

No

Yes

8 months

Yes

Yes

Yes

NOTE: Evaluations were conducted of individual sources only, not of sources to which they could be linked. BRFSS, Behavioral Risk Factor Surveillance System; CAHPS, Consumer Assessment of Health Plans Survey; HCUP, Healthcare Cost and Utilization Project; MCBS, Medicare Current Beneficiary Survey; MEPS, Medical Expenditure Panel Survey; NAMCS, National Ambulatory Medical Care Survey; NHAMCS, National Hospital Ambulatory Medical Care Survey; NHANES, National Health and Nutrition Examination Survey; NHIS, National Health Interview Survey; NIS, National Immunization Survey; NVSS, National Vital Statistics System; SEER, Surveillance, Epidemiology, and End Results; SLAITS, State and Local Area Integrated Telephone Survey.

a 1 = safety, 2 = effectiveness, 3 = patient centeredness, 4 = timeliness.

b 1 = staying healthy, 2 = getting better, 3 = living with illness or disability, 4 = coping with the end of life.

c State administered with considerable variability across states. However, there is a core set of questions that is used by all states.

d Evaluation includes both core and supplemental items of CAHPS 2.0 for both child and adult versions.

e With limitations.

f Targeted eligibility criteria for inclusions. Medicare claims data applies only to beneficiaries in fee-for-service Medicare. MCBS is administered to Medicare beneficiaries. The NIS is a screening survey for children 19-35 months and is by telephone so it exludes those without phones. SEER is limited to those with cancer. SLAITS is being piloted in some states.

g Evaluation of version of MEPS containing enhancements planned by AHRQ (Lefkowitz, 2000).

h Although MEPS contains followback surveys with providers, individual survey data cannot at this time be linked to clinical records.

i Annual since 1999.

j Birth and death data only, not related surveys.


SOURCES: Arispe, 2000a; Cynamon, 2000; Darby, 2001; Dickey, 2000; Elixhauser, 2000; Eppig, 2000; Johnson, 2000; Powell-Griner, 2000; Schapport, 2000; Yang, 2000 (see text for additional sources.)

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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Note: Complete chart on previous page.

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TABLE 4.2 Preliminary Evaluation of Private Data Sources on Health Care Quality

Comprehensiveness

     

Scope

   

Other Data Source Criteria

     

Type and Name of Source

Condition-Specific Data

Links to Clinical Information

Components of Health Care Qualitya

Consumer Perspectives on Health Care Needsb

National Coverage

State or Regional Coverage

Released Annually

Timely Availability of Data

Consistency of Content over Time

Supports Population Sub-group Analysis

Publicly Accessible Data

HCFA Peer Review Organizations (PROs) (sixth contract cycle)c

Yes

Yes

2, 4

1–3

Yes

Yes

NAd

1 year

Nod

Yes

Yes

National Cancer Data Base (NCDB)c

Yes

Yes

2, 4

2, 3

Yes

Yes

Yes

1 year

Yes

Yes

Yesc

ORYX (JCAHO)c

Yes

Yes

2, 4

1–3

Yes

Yes

Yes

3 months

Yes

Yes

No

Quality Compass (NCQA)c

Yes

Yes

2–4

1–3

Yes

Yes

Yes

1 year

Yes

Yes

Noe

NOTES: Evaluations were conducted of the individual sources only, not of other sources to which they could be linked. NA=not applicable. HCFA, Health Care Financing Administration; JCAHO, Joint Commission on Accreditation of Healthcare Organizations; NCQA, National Committee for Quality Assurance.

a 1 = safety, 2 = effectiveness, 3 = patient centeredness, and 4 = timeliness.

b 1 = staying healthy, 2 = getting better, 3 = living with illness or disability, and 4 = coping with the end of life.

c Targeted eligibility criteria for inclusions. The NCDB covers data on patients with cancer as reported by 1,600 hospitals nationwide. ORYX covers those health care organizations accredited by JCAHO. The HCFA PROs sixth contract cycle covers quality measurement of care for Medicare beneficiaries. Quality Compass includes data from those managed care organizations accredited to NCQA.

d HCFA PROs have contracts in a given contract cycle for 3 years. In addition, the 3-year periods are staggered. This means that PRO X could still be reporting under one contract while PRO Y could be reporting under a more recent contract. Also, the set of data collected by the PROs can differ by contract cycle.

e Quality Compass data can be reported publicly only by organizations licensed to do so. By 2001, all managed care organizations accredited by NCQA must permit their performance measures to be reported publicly.

SOURCES: Elstein, 2000; Hankey, 1999; Institute of Medicine and National Research Council, 2000; National Committee for Quality Assurance, 2000; Schilling, 2000; Schyve, 2000. See text for additional sources.

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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Note: Complete chart on previous page.

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As Table 4.2 shows, there are important limitations in the use of these private databases. First, the data sources evaluated here contain data on subpopulations rather than data from representative national samples. In addition, the subpopulations themselves are often not well-defined subsets. Currently, Quality Compass data are collected from those managed care organizations accredited by NCQA that have agreed to public reporting of performance measurement results, which in turn represent a subset of the approximately 50 percent of managed care organizations in the nation that are accredited by NCQA (Schilling, 2000). The National Cancer Data Base is drawn from data from 1,600 hospitals, which tend to be those with computerized cancer registries (Institute of Medicine and National Research Council, 2000).

Second, consistent availability of the data over time can be an issue. Specifically, the three-year contract cycles under which HCFA PROs report contain different measurements, limiting the ability to capture change in specific areas of health care quality over time. Also, different PROs begin and end a contract cycle at staggered times, reducing the potential of using these data to draw conclusions about performance during a period of time. There has been some overlap in the conditions targeted for special attention in each cycle. For example, AMI was targeted in both the fifth and the sixth contract cycles. However, continuity is not an objective, and overlap has been the exception (Elstein, 2000).

Third, much of the data are not publicly accessible. Although some data from the Quality Compass are reported publicly, this generally occurs only at the aggregate level and only by those licensed by NCQA (National Committee for Quality Assurance, 2000). In the case of JCAHO, there are plans to make organizational-level ORYX data publicly available, but organizationally identifiable raw data will not be released publicly either (Schyve, 2000).

This is not to say that these limitations rule out the potential use of private data sources as elements in the National Health Care Quality Data Set. For example, data reported by PROs have often been used to gauge health care quality (Dartmouth Medical School, Center for the Evaluative Clinical Sciences, 1998; Jencks et al., 2000). In addition, PRO data have the particular potential to supplement public data sources on the health care quality aspect of effectiveness, at least for a given contract cycle or annual edition of the Quality Report.

Coverage of Health Care Quality Components

This section looks more closely at the coverage that public and private data sources offer for the components of quality and consumer perspectives on health care needs included in the framework. As shown below, MEPS supports measures on several of the components of health care quality, but not all. In addition, its support is uneven. Even with the addition of a CAHPS component and other enhancements planned by AHRQ, MEPS will have to be supplemented with other data sources, particularly in the quality components of safety and effectiveness.

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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Safety

In the framework, safety is defined as “avoiding injuries to patients from care that is intended to help them” (Institute of Medicine, 2001). Chapter 2 explains how safety can be analyzed along the continuum of care of diagnosis, treatment, including medication, and follow-up. Safety also involves the total health care environment. At present, the public and private databases evaluated in Table 4.1 and Table 4.2 contain few questions that speak directly to safety. This gap is not unusual—safety is an aspect of health care quality in which measurement is particularly underdeveloped relative to other components of quality (Institute of Medicine, 2000).

In the short term, this gap could be filled by the use of safety measures suggested in Chapter 3, such as selected sentinel events (for example, wrong-site surgery) reported to JCAHO; data on hospital-acquired infections collected by the Centers for Disease Control and Prevention's (CDC's) National Nosocomial Infections Surveillance System; and selected adverse hospital outcomes tracked by HCUP (Agency for Healthcare Research and Quality, 2000c; Centers for Disease Control and Prevention, 2000c; Joint Commission on the Accreditation of Healthcare Organizations, 2000c). However, these data provide a very limited and highly fragmented view of the safety of health care. They do not address important safety issues such as errors of omission, failure to diagnose or delay in diagnosis, or patient injuries related to an unsafe environment, and they do not include data for the corresponding measures such as restraint-related deaths and medication-related deaths or disability (Institute of Medicine, 2000). As a result, these data can yield a potentially misleading picture of safety, for example, by underestimating the extent to which patient injuries or harm occur or accounting for safety only in hospital settings.

In the future, much more research will be needed on valid and reliable measures of health care safety to provide a more complete picture of this component of quality. AHRQ should aggressively foster new studies on this important and underdeveloped area. This research will be a necessary prerequisite for the further development of safety measures within existing data sources, as well as the further development of new data sources such as electronic clinical information (Quality Interagency Coordination Task Force, 2000). Surveys of patients after they have been discharged from the hospital represent another potential source of safety information regarding, for example, hospital-acquired infections or unwanted side effects after surgery.

Effectiveness

Effectiveness refers to “providing services based on scientific knowledge to all who could benefit, and refraining from providing services to those not likely to benefit (avoiding overuse and underuse)” (Institute of Medicine, 2001). As also explained in Chapter 2, it includes (1) effectiveness of preventive care;

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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(2) effectiveness of acute, chronic, and end-of-life care (usually with respect to specific conditions); and (3) appropriateness of the procedures. As such, effectiveness is integrally related to the health care needs of staying healthy, getting better, living with illness, and coping with the end of life.

As the definition suggests, to measure effectiveness it is especially important to probe whether people with specific health conditions are receiving needed care. Public and private data sources have offered coverage of condition-related treatment. For example, up to the present, MEPS data on conditions have been generated by survey questions that have asked respondents to recall provider appointments, hospital stays, emergency room visits, or other events; the treatments they received; and the conditions to which these events and treatments are tied. MEPS data generated by questions on prevention are more explicitly linked to conditions. For example, the alternative and preventive care sections of the household component contain questions on blood pressure and cholesterol-level checks, flu shots, prostate exams, and Pap smears, among other practices (Agency for Healthcare Research and Quality, 2000d). Data on effective treatment for certain conditions might be less reliable than data on prevention since they were generated with catch-all questions used by MEPS, which ask respondents to recall conditions and treatments over a two-year period. Followback surveys with providers and insurers may not be sufficient to fill in all of the needed information.

This situation is likely to change soon, given that the Healthcare Research and Quality Act calls for improved MEPS coverage of condition-based treatment (Healthcare Research and Quality Act, 1999). In keeping with the act and addressing the issue raised above, AHRQ has identified 15 priority conditions, with an initial focus on increases in sample size for 7 conditions: arthritis, asthma, chronic obstructive pulmonary disease (COPD), coronary heart disease, diabetes, hypertension, and stroke (as discussed in Chapter 2). Future versions of MEPS include screener questions to identify patients with these conditions. For some, there could be questions that probe appropriate treatments of household members depending on the condition. For example, MEPS will borrow several questions from the Diabetes Quality Improvement Project (DQuIP) to measure quality of care for diabetes, including aspects such as foot and eye exams and insulin injections (Lefkowitz, 2000).

MEPS could also serve as a “platform” for patient-approved review of medical records to examine more clinically specific measures of effectiveness that rely on the findings of various laboratory tests and clinical diagnoses. To a limited extent, this is already done. However, collecting such data on a larger scale is costly and would require significant additional resources to achieve meaningful sample sizes.

AHRQ could further supplement its coverage of specific conditions by drawing from other public and private data sources. Both Medicare claims data and particular HCFA contract cycles with PROs provide data with which to

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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measure a range of issues in effectiveness. Specifically, they could be used to examine the underuse and overuse of effective medical care for particular conditions, as well as different stages of care (or health care needs) such as getting better or coping with the end of life, and the appropriateness of procedures (Dartmouth Medical School, Center for the Evaluative Clinical Sciences, 1998).

Patient Centeredness

Patient centeredness refers to health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients' wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care. As discussed in Chapter 2, patient centeredness addresses two aspects: (1) the patient's experience of care, and (2) the establishment of an effective partnership between patients and providers. These two aspects of patient centeredness are relevant across all of the consumer perspectives on health care needs.

In general, MEPS does a better job of providing data on the patient's experience of care than on effective partnerships. The household component contains several MEPS questions that address the first dimension. For example, questions in the section on access to care ask respondents whether their providers listen to them and supply needed information. In addition, a question in the section on medical provider visits probes how much time providers have spent with their patients. However, respondents are not asked whether they felt the time was sufficient. Proposed questions drawn from CAHPS will help to provide more data on the experience of care. They ask respondents whether their clinicians or their children's clinicians listened to them, explained things in ways they could understand, and showed them respect (Lefkowitz, 2000).

However, even if the proposed questions are added, this leaves at best minimal coverage of effective partnerships. The Quality Report should identify sources that include questions on important aspects of effective partnerships, such as the degree of cultural competence (essential to customize health care for an increasingly diverse population) (Waidmann and Rajan, 2000). It should also survey efforts to educate patients about health care, as opposed to merely attempting to inform them about certain facts. Given the substantial proportion of Americans who now have access to the Internet (Economic and Statistics Administration and National Telecommunications and Information Administration, 2000), there should also be questions on efforts to use this medium to educate patients, communicate with providers, and support self-management (Balas et al, 1997; Kinsella, 1998).

Timeliness

Chapter 2 defines timeliness as obtaining needed care and minimizing unnecessary delays in getting that care. Specifically, timeliness includes (1) access

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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to the system of care; (2) timeliness in obtaining care for a particular problem; and (3) timeliness within and across episodes of care.

Access to the system of care coincides with one of the chief data collection objectives of the MEPS survey. The household component of MEPS contains several sections that directly or indirectly examine issues of access. For example, there is a series of questions on the regular place to which household members go for health care including specific questions that probe reasons for not having a regular place of care or for preferring to use places such as emergency rooms for care. Additional MEPS questions that are being proposed would also focus on access to care (Agency for Healthcare Research and Quality, 2000f).

MEPS also contains data on the ability of household members to obtain care for a particular problem—another aspect of timeliness. For example, in the section on access to care there are questions on transportation, convenience of office hours, ease of getting appointments, and telephone access. Several questions drawn from CAHPS are also being proposed (Lefkowitz, 2000). Aside from two questions related to diabetes, they are general and not tied to specific problems or conditions. Instead, they involve individual visits and solicit responses on the ease of obtaining care as soon as it was wanted as soon as respondents or their doctors thought it necessary (Lefkowitz, 2000). It should be noted that not all condition-specific data require condition-specific questions. For example, one could assess responses to questions on timeliness from patients who are seen for chronic illnesses versus those who are seen just for preventive care or acute problems.

Currently, MEPS does not have questions that specifically address timeliness within and across episodes of care. The sixth contract cycle for the HCFA PROs contains data related to timeliness within and across episodes of care that could be used as a supplement. For example, for pneumonia, there are data indicating whether and when Medicare patients received antibiotics, blood cultures, and other appropriate treatments. The same holds true for timeliness in the episode of care with respect to AMI (Jencks, 2000). However, because contract cycles target particular conditions and aspects of quality of care that can vary from cycle to cycle, relying on supplemental data from PROs can be only a very short-term strategy for supplementation. Medicare claims data could also be used to examine timeliness within and across episodes of care for Medicare beneficiaries. Although claims data have well-documented drawbacks (Fowles et al., 1995; Jollis et al., 1993; Lohr, 1990; Romano et al., 1994; Weintraub et al., 1999), they could be used to examine such dimensions as dates of diagnoses and treatments billed to Medicare, as well as some patient and provider characteristics.

DATA SOURCES FOR THE NATIONAL HEALTH CARE QUALITY REPORT

In the short term, a mosaic of existent data sources will be used to create the National Health Care Quality Data Set, which in turn will be used to examine a

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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number of areas in health care quality as discussed in Chapter 2 and Chapter 3. However, given the many gaps in the presently available data sources on effectiveness and timeliness, AHRQ should supplement these sources with targeted medical record abstraction. To more adequately address these gaps, AHRQ should work to further the development and implementation of electronic data systems, including electronic medical records. In the long term, standardized electronic clinical information holds the key to providing data that will meet the criteria already presented in this chapter.

Data Sources in the Short Term

The Dartmouth Atlas of Health Care in the United States is an example of an annual report that uses the variety of existent public and private data sources to examine aspects of health care quality, including effectiveness (Dartmouth Medical School, Center for the Evaluative Clinical Sciences, 1998). In particular, the atlas makes extensive use of Medicare claims data to analyze whether beneficiaries received treatments, services, or drugs that have been proven effective or are believed to be so. For example, for the populations measured, the evidence suggests national underuse of immunization for pneumonia, certain tests and drugs for diabetes, and certain treatments for heart attacks. The atlas also presents benchmarks generated by the use of private data sources such as Kaiser-Permanente to make quality performance comparisons across the nation on a range of treatments, including those for heart attack and diabetes.

AHRQ could make similar use of public and private data sources to produce useful findings on timeliness and effectiveness in the National Health Care Quality Report. In addition, it will have to use different types of data in order to cover all aspects of the framework. For example, patient surveys are usually needed to examine patient centeredness and aspects of timeliness, while claims data for billing purposes have greater potential to capture information regarding safety and effectiveness. However, data drawn from administrative records present problems as well. For example, in addition to the limits on Medicare claims data previously described, certain kinds of conditions and services tend to be underreported. Other limits include the difficulty of performing risk adjustment on claims data because necessary information is not available (Iezzoni, 1997; Institute of Medicine and National Research Council, 1999; Malin et al., 2000). The development of standardized electronic information systems to capture clinical data will be necessary to efficiently obtain detailed data on effectiveness and safety on a wide scale.

As explained above, current administrative sources also provide inadequate data on safety, for different reasons. At present, safety reporting by providers and health care organizations is limited, which lessens the amount of data on safety that is available for analysis. Current reporting tends to be voluntary, confidential, and nonstandardized (Institute of Medicine, 2000). AHRQ, as part of the Quality Interagency Coordination Task Force (QuIC), is working to address

Suggested Citation:"Data Sources for the National Health Care Quality Report." Institute of Medicine. 2001. Envisioning the National Health Care Quality Report. Washington, DC: The National Academies Press. doi: 10.17226/10073.
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issues related to patient safety, including issues that limit reporting (Quality Interagency Coordination Task Force, 2000). Until these issues are resolved and new data sources are developed, data on safety will be relatively sparse and incapable of supporting useful measurement.

After existent data sources have been used to identify areas of effectiveness and timeliness in which closer study is needed, AHRQ could turn to targeted medical record abstraction, at least in the short term, given that electronic clinical data are not available. Information supplied by medical records includes medical history; diagnostic data such as information from the physical examination performed; presence of other diseases or comorbidities; clinical information such as the results of laboratory tests; and description of the treatment plan (Institute of Medicine and National Research Council, 1999). Compared to other administrative sources such as claims data, data from medical records tend to have greater clinical detail. For example, according to one study, medical records more clearly differentiate complications and comorbidities than do administrative data (Hannan et al., 1995). They may also include information on outcomes. In addition, they can supply information that is often needed to perform risk adjustment. For inpatient care, they differentiate between a person's condition before hospitalization and a new condition that might have arisen during hospitalization, which claims data often do not (Iezzoni, 1997; Institute of Medicine and National Research Council, 2000).

RAND's QA Tools system is a data source in development that provides an example of medical record abstraction as a means of supplementing administrative data. Medical records abstracted for QA Tools supply data that can be used primarily to support measures of effectiveness, although they can also support some measures of safety, patient centeredness, and timeliness. They can also support the health care needs—staying healthy, getting better, living with illness or disability, and coping with the end of life (see Appendix B) (McGlynn, 2000).

Collecting data from paper medical records can also be problematical (Institute of Medicine, 1997; Institute of Medicine, 2001; Institute of Medicine and National Research Council, 2000; McDonald et al., 1997; Palmer, 1997). Locating and abstracting physical records take time and labor, and abstracted data will likely contain some errors. However, the kind of information collected from medical records makes it easier to measure health care quality comprehensively, across components of health care quality and consumer perspectives on health care needs. It also facilitates examination of the quality of care for specific health conditions. For example, to measure effectiveness, inpatient medical records make it possible to assess whether people received prescriptions for appropriate medications given their medical profiles. To measure timeliness, inpatient medical records make it possible to identify the time at which a particular drug was administered, which a patient may not be able to recall accurately. Medical records are useful to examine certain safety problems. However, because patient injuries occur relatively infrequently, administrative files are usually necessary

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to target the search. The long-term solution to the need for accessible data on these aspects of health care quality lies in electronic clinical data systems that span health care settings. This would greatly facilitate access to information currently registered in paper medical records and should be part of a new health information infrastructure that contributes to quality reporting and improvement.

Another short-term challenge with data sources should be acknowledged: it is especially difficult to obtain population-based measures for processes of care that affect relatively small populations. Examples would include those that refer to a particular chronic condition that is not very common, or to a specific procedure. A survey such as the expanded MEPS or a population-based medical record review will usually not have large enough samples of patients from such subpopulations to measure the quality of their care adequately. Typically, such measures are targeted to the appropriate subpopulation by using administrative record systems (such as claims databases) to find eligible patients and then conducting medical record reviews for those patients. Although this approach may be adequate for measures applied to members of specific health plans or being treated at specific hospitals, at this time there is no corresponding universal database that can serve as a sampling frame for collecting such data for measures of an entire population.

Encouraging the Long-Term Development of Electronic Clinical Data Systems

Compared to paper records, electronic clinical data systems would offer several clear advantages in promoting health care quality. For example, they could provide linkages to clinical knowledge bases needed to support health care decision making. Electronic clinical data systems would facilitate quality reporting by making it more feasible to collect more comprehensive information. Depending on how standardized they become across health care settings, they could also make it easier to produce the kind of universal database needed to support a sampling frame for measures of processes that affect small populations. Currently, the availability of medical records is a significant issue. According to a study by the General Accounting Office, one hospital it examined was not able to find the proper records 30 percent of the time (1991). According to other studies, lost, misplaced, and inaccessible paper records are not uncommon (Institute of Medicine, 1997).

For the Agency for Healthcare Research and Quality to take an active role in fostering the development and implementation of electronic data systems is consistent with the Healthcare Research and Quality Act of 1999. The act calls for the agency to promote a range of innovations in health information, including the “use of computer-based health records in all settings for the development of personal health records for individual health assessment and maintenance, and for monitoring public health and outcomes of care within populations” (Healthcare Re-

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search and Quality Act, 1999:Sec. 914). Experts in the field of information technology have advocated a diverse set of solutions to encourage the development of electronic clinical data systems (Institute of Medicine, 1997; Stead, 1998; Stead et al., 2000). These include the definition of uniform data standards, the development of standard software architectures, and the use of emerging e-commerce technologies to support patient (as contrasted to facility) ownership of the record. NCVHS recently issued a report to the Secretary of Health and Human Services with recommendations for the definition of uniform data standards for the electronic exchange of patient medical record information (National Committee on Vital and Health Statistics, 2000). The implementation of these standards should facilitate the development of a health information infrastructure that could support the type of Quality Report recommended by this committee.

The development and implementation of electronic clinical data systems in health care will also require several long-term strategies. These include support for medical informatics research, support for demonstration projects, and incentives for the use of electronic clinical data systems in medical practices. Incentives could be linked to billing requirements, for example, or to evidence of quality improvement and implementation of best practices. It is important to note that electronic data systems should be designed primarily to assist in patient care so that they can be used effectively and the data can be coded accurately. However, the design of such systems, especially with respect to confidentiality and consistency in terminology and coding, should reflect the need to pool data across organizations (Stead, 1998).

New regulations to protect the privacy of health information could limit access to data in patient records that may be needed for the National Health Care Quality Data Set. On December 20, 2000, DHHS announced the final rule to protect the confidentiality of patients' medical records, formulated in response to one of the provisions of the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (Health Insurance Portability and Accountability Act, 1996; U.S. Department of Health and Humans Services, 2000a). Under this final rule, patients have considerable control over how their health information is used. Health plans, health care clearinghouses, and health care providers who conduct certain transactions electronically must obtain patient consent to release their medical records. However, certain exceptions are allowed when the need for access to information for the public good outweighs the need to protect individual privacy. The Quality Report may be one of these cases, given that information may be disclosed without individual authorization for the “oversight of the health care system, including health assurance activities” (U.S. Department of Health and Human Services, 2000b).

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INCREASING ACCESS TO THE NATIONAL HEALTH CARE QUALITY DATA SET

The data sources required to support a comprehensive set of measures of health should be made available as the National Health Care Quality Data Set. However, all information in the data set cannot be included in the Quality Report. As explained in Chapter 5, both the print and the web versions of the report should be selective in what they contain. To capture the attention and interest of consumers, the media, policy makers, and other audiences, neither version should be overly long or detailed.

The Agency for Healthcare Research and Quality should make it easy for researchers and other policy specialists to use the data to explore trends, developments, and patterns in health care quality. The data set may be too large to place on the Web in its entirety. However, the agency should develop comprehensive public use data sets, along with all appropriate documentation, to the extent feasible. Where possible, researchers should be able to download data for analysis with statistical software. It would also be helpful if researchers could readily generate summary statistics, along with additional simple analyses such as cross-tabulations and other kinds of tables. Data that cannot be placed on the Web should be made as readily available as possible for use by researchers and other specialists.

SUMMARY

The focus of this chapter has been on data sources for the National Health Care Quality Report. The chapter has presented selection criteria to help guide the choice of data sources for the National Health Care Quality Data Set, along with a preliminary evaluation of how well several public and private data sources meet the criteria. As explained in the chapter, the Agency for Healthcare Research and Quality should pursue both short- and long-term strategies in choosing data sources. In the short term, the realization of the committee's vision for the Quality Report will be restricted by the limitations of existing data sources in terms of content, data format, and representativeness of the data with respect to the entire population. According to the committee's preliminary evaluation, MEPS combined with CAHPS has the potential to serve as an important data source for the Quality Report in the areas of patient centeredness and timeliness. However, this will have to be supplemented with other public and private data sources to adequately measure safety and effectiveness.

At the same time, AHRQ should pursue a long-term strategy. Although population surveys will remain the best way of examining patient centeredness and some aspects of timeliness, AHRQ should encourage the development and broad-scale implementation of electronic clinical data systems that will provide the best data to evaluate effectiveness and particular aspects of the timeliness of care (for example, the time elapsed between diagnosis and the start of treat-

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ment). New data sources will also have to be developed to examine health care safety. Ultimately, a new health information infrastructure based on existent and new data sources (including computerized clinical data systems, population surveys, and specialized data systems) will be essential to generate an adequate database for the production of the Quality Report. This new health information infrastructure should also include data on specific population subgroups and should closely articulate local-, state-, and national level data systems.

The committee is aware that considerable obstacles must be overcome in order to achieve this vision. HIPAA and regulations concerning the patient's right to confidentiality can potentially restrict access to medical records. The lack of uniform data standards impedes the aggregation of data from local to national levels as advocated by the committee. In addition, the very nature of the subject—quality of care—requires access to a wide range of information that cannot be found in any single data source or combination of existent data sources. The Quality Report should be an instrument for driving change in federal data policy such that needed data that are not currently available are collected. Although considerable, these barriers are not insurmountable, and only by making headway in this direction will it be possible to adequately assess and track the quality of health care delivery in the United States.

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How good is the quality of health care in the United States? Is quality improving? Or is it suffering? While the average person on the street can follow the state of the economy with economic indicators, we do not have a tool that allows us to track trends in health care quality. Beginning in 2003, the Agency for Healthcare Research and Quality (AHRQ) will produce an annual report on the national trends in the quality of health care delivery in the United States. AHRQ commissioned the Institute of Medicine (IOM) to help develop a vision for this report that will allow national and state policy makers, providers, consumers, and the public at large to track trends in health care quality. Envisioning the National Health Care Quality Report offers a framework for health care quality, specific examples of the types of measures that should be included in the report, suggestions on the criteria for selecting measures, as well as advice on reaching the intended audiences. Its recommendations could help the national health care quality report to become a mainstay of our nation's effort to improve health care.

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