Beginning in 2003, the National Institutes of Health developed an explicit data sharing policy which encouraged scientists whose research is funded by NIH to develop ways to share their research data with the public and, more specifically, their fellow scientists. This policy coupled with other federal data sharing requirements and the explicit recognition of the synergistic value to science of broad based data sharing among scientists with similar substantive interests has led to a substantial and important expansion of structured and unstructured data archives and repositories. The first cycle of funding for this project established the basis for data infrastructure to support demographers housed at population centers and those researchers whose data collections have particular relevance to demographic research. The project proposed here is a continuation of a five year cooperative agreement that provides data archiving, preservation and dissemination and other data infrastructure services.
The specific aims of this project complement the original agreement's goals which included (1) data acquisition, curation, dissemination, and preservation (2) restricted use data sharing (3) user support and outreach, and (4) improvements in the science of data sharing including disclosure risk evaluation, complex data conceptualization and shared frameworks for data sharing (the legal framework) and data documentation (the Data Documentation Initiative). In this phase of the project, we bring new technologies and data architecture to help reengineer how we provide these services and to expand the integrated infrastructure support that will help improve the delivery of the parts of the demographic data collection that reside at ICPSR and those that reside in affiliated population centers. The goal is to work toward a legal, technical, and substantive framework in which to share research data in the population sciences. Specifically, with partners at the Carolina Population Center, Minnesota Population Center, Hopkins Population Center, Rand Population Research Center and the Michigan Population Studies Center, we will add new technologies to provide open source methods of data curation and dissemination.
The value of shared data resources such as Data Sharing for Demographic Research for health sciences cannot be understated. The analysis of secondary data undergirds many of the important findings on health disparities, fertility and family formation, sources of differential mortality, and determinants of many health behaviors.
|VanWey, Leah K; Rindfuss, Ronald R; Gutmann, Myron P et al. (2005) Confidentiality and spatially explicit data: concerns and challenges. Proc Natl Acad Sci U S A 102:15337-42|