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Data infrastructure for aging research

John Haaga
John HAAGA,
Director, BSR,
Division of Behavioral and Social Research (DBSR)
.

Though research on age differences has its place, almost by definition, research on aging involves tracking people over time periods long enough to observe long-term changes in their lives and health. And, accurate measurements of large samples can be an expensive undertaking. The NIA has made major investments to create and maintain data resources that can be used for dozens—and in some cases, hundreds—of analyses, using the tools of the behavioral and social sciences. In a real sense, these are infrastructure investments, a bedrock on which to build a solid understanding of aging, and are a basis for intervention. We need to know whether these studies, designed to produce data for wide use, continue to meet the changing needs of researchers who are applying new methods to new questions.

An impressive amount of information

NIA is among the leaders across NIH in making data, especially longitudinal data, available to the wider research community. The Division of Behavioral and Social Research recently asked an ad hoc committee to review its major data projects and assess whether they provide an “adequate basis for behavioral and social research on aging during the coming decade.”

The committee included past and current members of the National Advisory Council on Aging, and several other experts on the production and analysis of complex data sets. Dr. Eileen Crimmins of the University of Southern California chaired the committee, which presented its report at the January meeting of the Council. Several major scientific societies and units of the National Academies of Science, Engineering and Mathematics, provided input for the review, included as appendices to the report.

Among the many data sets that the committee reviewed were:

These major data projects collect self-reported data on many aspects of aging, health, and well-being. They also link information on physical performance, cognitive function and dementia, utilization of acute and long-term health care, social environments, and family resources, and so are used by researchers in many disciplines studying trajectories of aging and health outcomes

Results and recommendations

The report, posted on the NIA website, included both strategic and practical recommendations. Several of the recommendations mentioned that the increasingly interdisciplinary nature of research makes linkages to biospecimens, clinical data and other administrative records an important goal for social and behavioral research databases. The committee urged NIA to develop data resources for research on causes of health disparities at older ages to inform efforts throughout the lifecourse to prevent or ameliorate late-life disparities. Cross-national comparative research, the committee noted, can be very valuable but can also require significant work to harmonize measures and promote data access. The committee also encouraged methodological research to increase the information value of questions thus reducing the burden on respondents, and to safeguard the confidentiality of complex data.

NIA has also recently posted a Request for Information (RFI) on data sharing across all scientific disciplines which is open until April 15, 2017: https://grants.nih.gov/grants/guide/notice-files/NOT-AG-17-001.html

To meet our goal of keeping these and other major data resources useful for new generations of scientists and promoting the sharing of data, we must regularly review and analyze these data. And, we will always need to learn from your experiences.

We welcome your reactions and comments, either as responses to this blog post, or, if you would prefer, you can comment anonymously or in person at http://roseliassociates.com/bsrdata.

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