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Suggested Citation:"COORDINATION." National Research Council. 1998. Providing National Statistics on Health and Social Welfare Programs in an Era of Change: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/6097.
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Page 15
Suggested Citation:"COORDINATION." National Research Council. 1998. Providing National Statistics on Health and Social Welfare Programs in an Era of Change: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/6097.
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Page 16
Suggested Citation:"COORDINATION." National Research Council. 1998. Providing National Statistics on Health and Social Welfare Programs in an Era of Change: Summary of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/6097.
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Page 17

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IMPLICATIONS FOR DATA COLLECTORS 15 Implications For Data Collectors The changes in data required from national household surveys to accurately monitor health and social welfare programs in the United States pose substantial challenges for data collectors. These challenges include improved coordination between the statistical agencies that collect data and the policy and research agencies that use the data; research to inform questionnaire design and administration; approaches to validating survey responses; means to build flexibility into surveys with respect to content changes; and modification of sampling schemes to provide reliable subnational estimates. Workshop participants stressed that constraints on survey budgets will make it particularly difficult to meet these challenges, placing yet greater importance on coordination of effort and identification of priorities for data. Coordination has the potential to reduce duplicative work, fill gaps in knowledge, standardize concepts and definitions, and facilitate consistent approaches to questionnaire design, sampling strategies, and survey administration. Coordination is also essential for data collectors to properly evaluate tradeoffs and make the best possible choices among competing uses of limited resources for new and modified data collection, expanded samples, and research on data collection methods and data quality. COORDINATION The need for partnerships among agencies was a major theme of the workshop. In particular, better coordination is needed between the federal statistical agencies (e.g., the Census Bureau, the National Center for Health Statistics, and the Bureau of Labor Statistics) and the federal program planning and evaluation agencies (e.g., the Office of the Assistant Secretary for Planning and Evaluation, the Administration for Children and Families, the Agency for Health Care Policy and Research, and the Health Care Financing Administration in the U.S. Department of Health and Human Services; as well as the Social Security Administration). The statistical agencies played little role in the development of PRWORA; they must now work closely with the agencies that are involved in assessing the effects of changes in health and welfare programs if national household surveys are to be able to provide relevant information for analysis purposes. Federal agencies that sponsor related research, such as the National Institute on Aging, the National Institute on Child Health and Human Development, and the National Science Foundation,

IMPLICATIONS FOR DATA COLLECTORS 16 could also participate in cross-agency cooperative efforts to improve the available data for monitoring and evaluating health and social welfare programs. These agencies sponsor surveys (e.g., the Panel Study of Income Dynamics) that have provided useful information in the past and that could both contribute to and build on improvements in the major national household surveys. Given that national surveys cannot carry the entire burden of providing needed data for program analysis, workshop participants stressed the importance of forming partnerships that could provide useful data for linking with national surveys, supplementing them, and evaluating the quality of their responses. Such partnerships would involve the collaboration of federal statistical and policy agencies with state agencies. Workshop participants also noted that several private foundations and other organizations are involved in data collection to assess changes in health and welfare programs (see Table 1). While private organizations often have their own interests in terms of question content and may obtain only limited data, it could be mutually beneficial for them and government agencies to exchange information about questionnaire design and administration and survey results. The utility of coordinating efforts between the states and the federal government was underscored at the workshop. Linking national survey data with state and local administrative data through exact matches of records for individuals and households is a way not only to validate the survey data, but also to add information from the administrative records that is not readily collected in a survey. States can also help to ensure the relevance and quality of national household surveys by reviewing questionnaire wording and other aspects of survey design from their knowledge of local program operations and policy concerns. Workshop participants noted further that, under PRWORA, states have strong financial incentives to produce timely reports but few incentives or resources to design comparable, reliable and accessible data, while the federal government has a strong interest in ensuring the development of a consistent and reliable tracking system for the new state programs. By forming partnerships, the states and federal government could better assure consistency and reliability of measures, while the states could reduce the costs of implementing new administrative data systems.10 However, an unintended result of devolution may be that it places new barriers in the way of intergovernmental partnerships that are designed to improve the accuracy and availability of data on health and social welfare programs. PRWORA, along with the granting of administrative waivers, makes state and local governments increasingly responsible for welfare programs and their outcomes. To the extent that data provided by federal-state linkages can be used to critically examine welfare programs, states may be reluctant to reveal information and to enter into partnerships with the federal government. The National Assessment of Educational Progress (NAEP) provides an example of a successful federal- state data collaboration effort on a highly politically charged issue. Originally, states did not want measures of educational achievement that could be compared across jurisdictions, and NAEP was designed so that only national-level estimates could be produced from the data. Subsequently, increasing public concern about educational issues led to a willingness on the part of the states to compare their performance, and NAEP was recently redesigned to provide state-level estimates. Other types of data linkages that were discussed at the workshop concerned integration of survey responses from households with data from other sources, such as reports of employers and 10 Brady and Snow (1996) suggest that the development of data systems to track caseloads over time and across counties, as mandated by PRWORA, will pose substantial challenges for many states.

IMPLICATIONS FOR DATA COLLECTORS 17 providers, or data on contextual characteristics of areas in which respondents reside (e.g., unemployment rates). Linking household survey responses to employer and provider-level data has always been important for analyses of health care programs, which require accurate measures of medical care expenditures and features of health insurance plans that households typically cannot provide. In order to have regularly updated measures for assessing health care programs, MEPS was initiated as a continuing survey of medical care expenditures in which household survey reports are augmented by reports from the households' employers, insurance carriers, and medical care providers. (Previously, such medical expenditure surveys were only conducted at long intervals.) In addition, MEPS is linked to other health-related surveys: the sample for MEPS is a subsample of NHIS, which provides a rich set of data on health status and conditions, and the MEPS employer questionnaire is the same as that used for the National Employer Health Insurance Survey (NEHIS), which is a large annual survey of employers about their health insurance plans. Historically, there has not been a parallel need in the welfare context to link household survey responses with employer or provider data, which can be difficult and costly to obtain. However, this may change with the new emphasis on such third-party benefits as employer wage subsidies and day care services. Also, it may be possible through collaborative efforts of statistical and policy agencies to identify opportunities to link welfare- related surveys in ways that are similar to those for health-related surveys.11 The Survey of Program Dynamics (SPD), which PRWORA mandated to help track the effects of welfare reform, particularly for children, represents a type of linkage. The SPD sample cases, who will be followed annually for 6 years beginning in 1997, are drawn from the 1992 and 1993 SIPP panels, making it possible to link the SIPP data already collected with information collected subsequently in the SPD. Several participants noted that the Health Insurance Portability and Accountability Act provides important new opportunities for data standardization and integration in the health area. In particular, the administrative simplification provisions of HIPAA direct the secretary of the Department of Health and Human Services to develop a single set of national standards and identifiers for certain electronic transactions, including claims, enrollment, eligibility, payments, and coordination of benefits. Health care providers and health plans will be required to use these national standards for all electronic administrative and financial transactions. If properly implemented, HIPAA opens the door for the development of a core, standardized health benefits database that potentially could be readily linked to other data. Workshop participants stressed the need to protect the confidentiality of individual information in considering data integration and linkage. It may not be easy to provide access to data sets that link survey responses with administrative records or with reports of employers or providers in ways that maintain the assurances of confidentiality protection that are embodied in law and statistical agency practice.12 More generally, throughout the workshop participants stressed the need to carefully consider both the legal and ethical issues involved in collecting detailed survey data on program participants. 11 Such linkages among federal surveys may be facilitated by new legislation. The administration recently proposed a bill that provides for sharing of microdata among federal statistical agencies to permit the development of more efficient sample designs and similar tasks. The bill was not acted on in the 104th Congress (1995-1996), but its provisions were incorporated into a bill that is being considered in the 105th Congress (1997-1998). 12 U.S. Code Title 13, for example, prohibits the release of individually identifiable data for samples drawn directly or indirectly from the decennial census. See Duncan, Jabinc, and de Wolf (1993) for a review of confidentiality provisions and issues for government statistics.

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