. "5 Alternative Approaches to Data Access." Access to Research Data in the 21st Century: An Ongoing Dialogue Among Interested Parties Report of a Workshop. Washington, DC: The National Academies Press, 2002.
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Access to Research Data in the 21st Century: An Ongoing Dialogue Among Interested Parties - Report of a Workshop
tion Surveillance System,” is to provide public access to data and statistical software and methods that are used in the NMMAPS. The system is regularly updated as new data are made available and investigators publish new work.
Phase I will create an Internet site to disseminate the NMMAPS data and provide statistical software. Phase II, funds permitting, will create an interactive system so that users can download analytical tools and manipulate data on their own. This approach is designed to provide easy access to data and to facilitate interaction with complex public data sets, including an EPA air database, mortality data from the NCHS, weather data, and Census data. Among the benefits of this approach is to open access to those with small budgets.
National Research Council. The National Research Council of the National Academies provides a different mechanism for data sharing and data assessment through independent studies by panels of experts. The NRC was chartered during the administration of Abraham Lincoln to provide advice to the government about scientific and technical matters. About 80 percent of its work is paid for by government agencies, but it remains administratively independent from the government as a private non-profit organization.
The studies conducted by the NRC, said Dr. Colglazier, are advisory in nature, not regulatory, although many of them influence regulatory policy. Typically, the NRC is asked to look at not only the underlying data, but also the experimental design, the methods of analysis and the execution of a study (studies). In addition to the work of the expert committee and National Academies staff, an independent group of experts reviews the finished report before release.
The National Academies work under an amendment to the Federal Advisory Committee Act to provide certain kinds of public access to their studies. When the National Academies receive information from outside parties, they do so in an open meeting. That information is put in a public access file that is subject to FOIA exemptions. The law also allows the National Academies to close their meetings when committees are deliberating on their final conclusions and recommendations. Draft reports and reviewers’ comments do not go into the public access file. The findings are made public when the report is publicly released.
NIH Office of Medical Applications of Research. The Office of Medical Applications of Research, said Dr. Kramer, is the focal point for medically based assessments of medical practices and state of the science. It is not directly advisory to the NIH; instead, it appoints a panel of experts to lead a “consensus development conference.” The panel is asked to form an independent judgment based on available evidence. This report is not vetted by the NIH and stands as an independent report.