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Improving Data on America's Aging Population: Summary of a Workshop Conclusions Future generations of persons aged 65 and older will be marked by two distinct characteristics: their size and diversity. Consequently, policy makers will require accurate data on the number, health status, economic well-being, employment behavior, living arrangements, and service utilization patterns of the elderly. Large, national, population-level data sets alone will not be sufficient to understand future generations of elderly, however. National policy makers currently are contemplating a major shift in responsibility for many social programs from federal to state governments. Such a shift will place even greater demands on the capacity of statistical systems to obtain local-level data on the aging population. Workshop participants agreed that data collected at the employer, insurer, and service-provider level are also essential to developing a comprehensive understanding of the aging population. Data collection can also be enhanced by integration and coordination among data sets. In the last 15 years, NIA, HCFA, AHCPR, and NCHS, among others, have invested heavily in new data collection efforts, as well as supplements and spinoffs to existing surveys. Many of these data collection efforts focus on distinct substantive questions, and on different segments of the old population. Moreover, the data collection efforts are administered by different agencies and investigators—each with its own approaches. Furthermore, budget constraints make it impossible for surveys to capture every possible piece of relevant information on the elderly. Therefore, participants suggested the need for both priorities for data collection efforts and strategies for achieving greater efficiency and coordination among extant data sets. Participants provided specific suggestions for data integration efforts, in-
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Improving Data on America's Aging Population: Summary of a Workshop cluding the integration of public and private data sources (such as data collected by the Robert Wood Johnson Foundation); integration of large national survey data with local-level data sources; integration of population-level data sources with administrative record data, such as those maintained by HCFA and the Social Security Administration; integration of population-level data with firm and employer-level data; integration of population-level data with (benefit) provider-level data; and integration of population-level data with demonstration data, such as Social Health Maintenance Organization data. Participants acknowledged, however, that as new and innovative data collection and integration strategies are developed, appropriate ethical guidelines must be delineated to safeguard confidentiality of individuals' information. The workshop concluded with participants suggesting steps for achieving the goals of promoting collaborative meetings, continuing to examine the fit between the information needs of decision makers and the available data, and improving the underutilization of existing data. One suggestion was to hold future meetings among principal investigators of major NIA-funded surveys. Other participants added that the aging process can best be understood from a life-course perspective; therefore, future meetings should benefit from the input of investigators who study childhood and midlife—as well as the older population. Many participants agreed that information about data sets and data dissemination should be made more widely available and accessible, and they noted a variety of efforts that are currently under way. For instance, the Federal Interagency Forum on Aging-Related Statistics produces the twice-annual report Data Base News in Aging. Federal agencies that produce and distribute aging-related data products are invited to contribute current information about the electronic data files and hard-copy data products and reports available from their organizations. In addition, most federal statistical agencies have developed—or are currently developing—procedures for researchers to access their data bases through the Internet. Moreover, under the auspices of the Interagency Council on Statistical Policy, the U.S. Office of Management and Budget has formed a Task Force on One-Stop Service for Federal Statistical Data Users. The task force is primarily responsible for designing and developing easy World Wide Web access to a broad range of federal statistics. Over the course of the workshop, an ambitious set of suggestions was made for improving existing data sets, enhancing data linkages, and developing new data sets. Participants also concluded that some general guidelines could be developed to determine whether a new data collection effort or existing data set is cost-effective and useful, and they proposed 10 questions to consider when assessing a data collection effort: Does the data source fill important information gaps? For example, does it address topics such as family, housing, and outcomes and effectiveness of care?
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Improving Data on America's Aging Population: Summary of a Workshop Are there redundancies? If so, what are the advantages and disadvantages of the redundancies? Do the data help to answer important policy questions? Are there statistical models to turn the data into useful information? Can the data help to anticipate future changes in the populations of interest? Can the data be linked or integrated with other sources (e.g., clinical research, provider and patient data, state-and local-level data)? What constraints does the need to protect confidentiality place on data linkage and integration? Do the data provide for state-level estimates and estimates for smaller geographic areas? Is the data collection design efficient and effective? For example, does it provide longitudinal data when they are required either for inferences or an efficient design? Are the survey measurement methods relevant, valid, advanced, and innovative? Are dissemination modes provided for the data? Is the availability of data made widely known? What research opportunities do the data provide for other related areas? Participants agreed that "there is no one data source for all seasons;" no single survey can address the data needs of all researchers and policy makers. Rather, the burden is on researchers and funding agencies to determine whether a new data collection effort or existing data set is cost-effective and useful. Encouraging greater access to existing data sets, unifying and integrating the existing data sets with administrative records, and assessing the merits of new data collection efforts are crucial for fostering and enhancing research on current and future generations of the aging population.
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