Behavioral and Social Science Data Abstracts |
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Medical
and Health Data
Behavioral and Social Science Data Data Policy Detailed ProgramList
of Participants About the CODATA 2002 Conference
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1.
Sharing data collection and sharing collected data: The NICHD
Study of Early Child Care and Youth Development The NICHD Study of Early Child Care and Youth Development came to life as a result of a 1988 NICHD solicitation (RFA) and is scheduled to terminate at the end of 2009. The aim of the solicitation was to bring together investigators from different universities or research institutions to collaborate with NICHD staff on the planning and execution of one longitudinal study with data to be collected across sites. The idea for such a collaborative study was unprecedented in the scientific field of developmental psychology. Ten data collection sites were selected on a competitive basis and the affiliated investigators, in collaboration with NICHD staff, have designed the different phases of the solicited longitudinal study and have implemented it. While the data collected at each of the sites belongs to the site, NICHD required that each of the 10 sites would send its data to a central location, the Data Acquisition and Analysis Center, for data editing, data reduction and data analyses. The study investigators, in collaboration of the data center staff, guide the data acquisition and analyses. Upon completion of an agreed upon quota of network authored scientific papers for a given phase of the study, individual study investigators get access to the data sets of the entire sample. A few months after the data sets and supporting documentation are available to individual study investigators for their exclusive use, the same data sets are made available to interested and qualified others in the scientific community. While the archiving of the data is done by an NICHD grantee, the Murray Center at Radcliff College has expressed interest in archiving the data and supporting their use by interested and qualified investigators. If the grantee institutions will accept the Murray Center request, the data collected by the grantees will be available to the scientific community beyond the life of the grant.
2.
Data Sharing at NIH and NIA NIA staff have been leading advocates for data sharing and have encouraged it among grantees, particularly when research involves large data sets that are valuable research resources and impractical to replicate. NIA will provide funds to make data that are well documented and user-friendly available to other researchers. Some examples of NIA supported activities in support of data sharing are described below: The National Archive of Computerized Data on Aging (NACDA), located within the Interuniversity Consortium for Political and Social Research (ICPSR), is funded by the National Institute on Aging. NACDA's mission is to advance research on aging by helping researchers to profit from the under-exploited potential of a broad range of datasets. NACDA acquires and preserves data relevant to gerontological research, processing as needed to promote effective research use, disseminates them to researchers, and facilitates their use. By preserving and making available the largest library of electronic data on aging in the United States, NACDA offers opportunities for secondary analysis on major issues of scientific and policy relevance. NACDA supports a data analysis system that allows the user to access subset variables or cases. The system can be used with a variety of data stets, including the Longitudinal Survey on Aging, National Survey of Self-Care and Aging, National Health and Nutrition Survey, National Hospital Discharge Survey, and the National Health Interview Survey. NIA supports a range of studies that have agreed to make data available to researchers. An example is the Health and Retirement Study, a nationally representative study that collects data on aging and retirement. The study is based at the University of Michigan and the Michigan Center on Demography of Aging makes data available to a range of researchers. Some data is available to anyone for analysis while other data sets are restricted and require contractual agreements prior to being made available for use. The presentation will address NIA's experience with the use of available data sets and raise some issues surrounding data sharing.
4.
Data Sharing and the Social and Behavioral Sciences at the National
Science Foundation At the heart of the National Science Foundation's (NSF) strategic plan are people, ideas, and tools. In the latter area, our goal is to provide broadly accessible, state-of-the-art information-bases and shared research and education tools. We actively encourage data sharing across all of our fields of study. This presentation will provide examples from the social and behavioral sciences. As data sharing is encouraged and increased, however, there are growing concerns and issues related to privacy and confidentiality. These issues will also be discussed, as will future directions in information sharing. At the NSF, the
Directorate for Social, Behavioral, and Economic Sciences (SBE)
participates in special initiatives and competitions on a number
of topics, including infrastructure to improve data resources,
data archives, collaboratories, and centers. This change will be illustrated by some examples of recent or continuing projects that we are supporting. For example, physical anthropologists utilize tools from a wide range of overlapping disciplines ranging from molecular biology (population genetics) to field ecology to remote sensing (paleoanthropology). In all of these areas large amounts of data are generated that are conducive to the establishment of digital libraries, databases, web-based archives and the like. A recent SBE Infrastructure award will be described that supports a number of interrelated activities that will advance research in physical anthropology, evolutionary biology, neuroscience and any others that may require information and/or biomaterials from nonhuman primates. An example in geography is the National Historical Geographic Information System (NHGIS) at the University of Minnesota, Twin Cities. This project upgrades and enhances U.S. Census databases from 1790 to the present, including the digitization of all census geography so that place-specific information can be readily used in geographic information systems. We expect that the NHGIS will become a resource that can be used widely for social science training, by the media, for policy research at the state and local levels, by the private sector, and in secondary education. Last year the National Science Board approved renewal of NSF support for the Panel Study of Income Dynamics (PSID). The PSID is a longitudinal survey initiated in 1968 of a nationally representative sample for U.S. individuals and the family units in which they reside. The major objective of the panel is to provide shared-use databases, research platforms and educational tools on cyclical, intergenerational and life-course measures of economic and social behavior. With thirty-plus years of data on the same families, the PSID can justly be considered a cornerstone of the infrastructure support for empirically based social science research. Additional examples
abound, and will be discussed. These include CSISS, the Center
for Spatially Integrated Social Science, at the University of
Santa Barbara; the fMRI Data Center at Dartmouth College, a
national cognitive neuroscience resource; data-rich linguistics
projects that support both the preservation of knowledge of
disappearing languages and statistically-guided approaches to
increasing our understanding of ongoing language use; systems
for storage and dissemination of multimodal (audio, visual,
haptic, etc.) data; and systems and techniques for the meta-analysis
of large scale data sets.
1.
Acquisition Criteria at the Murray Research Center: A Center
for the Study of Lives The Murray Research Center is a repository for social and behavioral sciences data on the in-depth study of lives over time, and issues of special concern to American women. The center acquires data sets that are amenable to secondary analysis, replication, or longitudinal follow-up. In determining whether or not to acquire a new data set for the archive, several kinds of criteria are used. The criteria can be roughly grouped into five general categories: content of the study, methodology, previous analysis and publication, historical value, and cost of acquiring and processing the data. Each of these will be described with an indication of the relative importance of each criterion, where possible.
2.
What Functional Neuroimaging Data is 'Worth' Sharing and the
Scope of Large-Scale Study Data Archiving
3.
Accession and Sharing of Geographic Information Geographic information
is a well-defined type, with complex uses and production systems.
The Alexandria Digital Library began as an effort to provide
remote access to a large collection of geographic information
(maps and images), but has evolved into a functional geolibrary
(a digital library that can be searched using geographic location
as the primary key). I use ADL to illustrate many of the issues
and principles inherent in sharing geographic information, and
in policies regarding its acquisition by archives, including
granularity, metadata schema, support for search across distributed
archives, portals and clearinghouses, and interoperability.
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Last site update: 15 March 2003
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