Improving Data on America's Aging Population Summary of a Workshop (1996) / Chapter Skim
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3 IMPROVING DATA SOURCES
3 IMPROVING DATA SOURCES
Pages 17-28
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From page 17... ...
With these shared concerns about fragmentation and resource constraints as a source of departure, six common themes regarding problems and suggestions for improving data on older Americans emerged from the workshop discussions.~° OVERSAMPLING SUBGROUPS OF THE ELDERLY The changing demographics of the elderly population, as well as shifting policy concerns, warrant inclusiveness in data collection efforts. In particular, {OOf course, not all participants agreed with each and every priority; for instance, some urged for detailed data collection at the state and local levels, while others called for more effective use of available data.
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From page 18... ...
Moreover, social change can be assessed by contrasting the experiences of diverse cohorts. Caution must be taken in extrapolating from the experience of earlier cohorts, however; each birth cohort arguably has unique characteristics, and newer cohorts of the old, especially the post-World War II baby boomers, may have very different health, education, work history, family arrangement, and benefits profiles than earlier cohorts.
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From page 19... ...
CROSS-AGENCY COORDINATION AND DATA INTEGRATION The need for improved cross-agency planning and coordination, as well as coordination and data integration across multiple data sources, emerged frequently as a point of discussion.ll Since the early 1980s, the availability of large longitudinal and cross-sectional data sets on aging has increased dramatically. In the last 15 years, NIA has invested heavily in new data collection efforts, and various governmental departments have either supplemented existing surveys or developed new surveys to track the aging population.
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From page 20... ...
In 1995 NCHS launched the HHS survey integration plan, a major effort to restructure the health surveys sponsored by HHS in an effort to fill major data gaps, improve analytic utility, and create greater operational efficiencies. The plan addresses a range of linkages and consolidation approaches, including the integration of survey samples.
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From page 21... ...
Administrative records are invaluable sources of data: for example, the National Death Index provides information on the date, location, and cause of death, while Social Security Administration records provide detailed information on individual earnings. A tracking system has been developed whereby all NCHS surveys will be linked to National Death Index and HCFA data bases.
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From page 22... ...
Researchers are only beginning to tackle the ethical issues involved with the collection and analysis of genetic data. Among the ethical and consent issues raised during the workshop were informed consent for future genetic studies not yet planned; the ownership of genetic information; the disposition of genetic material and registry data, as well as implications for commercial processes; notification of study participants of new or unexpected findings; the implications for family members of genetic findings; the access of insurance companies to
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From page 23... ...
Since the avalanche of genome information expected to accrue over the next decade has led to concerns regarding the potential misuse of such information, this situation requires resolution of complex privacy, informed consent, and related ethical issues. Options range from completely anonymous testing to recontacting and obtaining additional information from NHANES III respondents.
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From page 24... ...
In general, federal government programs have employed actuarial forecasting methods, which traditionally have been used to anticipate the future fiscal risk of programs based on well-defined past experiences, while academic researchers have developed more sophisticated models of health, functioning, and life expectancy that describe such outcomes as a function of individual states and characteristics (Freedman and Soldo, 1994~. Workshop participants also observed that important factors in many projections concerning population size, composition, and health status are the future levels of age-specific mortality.
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From page 25... ...
Consequently, participants stressed the need for data collection and retrieval to be coordinated so that data collected at the local level can be aggregated to state and national levels and so that data collected at state and national levels can be related to data collected at local levels: doing so may permit comparison of effects across communities and states. Pressing needs include the selection of primary sampling units that are consistent with state-level estimation, inclusion of a sufficient number of cases for each state to permit accurate estimation, and making better use of claims data and other administrative records.
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From page 26... ...
Workshop participants pointed out that progress needs to continue in measuring each of the following: the timing, severity, and progression of chronic and acute health conditions; functional status, including ADLs and IADLs; psychological variables, such as denial and proclivity toward help-seeking behavior; and long-term care settings and characteristics. Measurement can be improved by calibrating survey measures and by striving for item comparability across surveys.
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From page 27... ...
Standardization of survey items was raised as a possible goal, yet one that may not be applicable to all research topics. For example, questionnaire items obtaining information on "health insurance provider" may not lend themselves to standardization over time and across surveys, as shifts occur in insurance provision arrangements.
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