Blockchain Papers

Narendra Kunapareddy, Parsa Mirhaji, David Richards, S. Ward Casscells

Although the decentralized and autonomous implementation of health information systems has made it possible to extend the reach of surveillance systems to a variety of contextually disparate domains, public health use of data from these systems is not primarily anticipated. The Semantic Web has been proposed to address both representational and semantic heterogeneity in distributed and collaborative environments. We introduce a semantic approach for the integration of health data using the Resource Definition Framework (RDF) and the Simple Knowledge Organization System (SKOS) developed by the Semantic Web community.

Jeffrey P. Cohn

In June the Office of Management and Budget proposed new, congressionally mandated guidelines to ensure the quality of the data gathered and disseminated by federal agencies. The new law augments the Paperwork Reduction Act, which already requires federal agencies to adopt processes to ensure data quality. Many scientists, however, worry that the guidelines—which require agencies to devise and implement procedures that make it possible for individuals to challenge the accuracy of agency information—could impede or prevent the flow of scientific information and undermine the peer review process. Comments submitted to OMB by 55 scientific societies and academic institutions, including the American Institute of Biological Sciences, supported the intent of the law. “As biomedical researchers whose work depends on the excellence of our own data, we are acutely aware of and sensitive to the importance of accurate data,” wrote Robert Rich, M.D., president of the Federation of American Societies for Experimental Biology (FASEB). The problem, scientists say, is not with the intent of the law but with the vagueness of the guidelines OMB proposes for implementing it. In particular, scientists argue that challengers seeking a correction of an agency's data should have expertise in the subject matter and should disclose any financial interest at stake in the outcome of the challenge. There should be a clear burden of proof on the person or group who made the initial charge to demonstrate why the data being challenged are inaccurate or wrong, added Elaine Hoagland, national executive officer for the Council on Undergraduate Research. Further, the OMB rules should contain adequate safeguards against frivolous challenges of scientific information. Those safeguards should allow government agencies to insist on the same degree of rigor and objectivity required of the original science, says Stephen Heinig, senior staff associate at the Association of American Medical Colleges (AAMC). “Scientists can fight out issues of data and methodology in the literature,” Heinig says. “That's the standard. We don't see any reason to change it.” And, noted AAMC President Jordan Cohen, the procedures mandated by the guidelines will be burdensome to agencies, whose staff—already struggling to meet core missions—will have to shoulder supervisory and reporting tasks that contribute little to the agencies' missions. Citing “errors” in Environmental Protection Agency data, as well as the sheer volume of information that EPA and other government agencies post on the Internet, Jim Tozzi explains that “we felt the need to ensure the quality of government data.” Tozzi, a former OMB official who is now a board advisor to the Center for Regulatory Effectiveness, an independent policy group that helped draft the new law, calls the debate over OMB's data quality proposals “a big hullabaloo over nothing.” Not so, say Washington's scientific and educational groups. “There is plenty of potential here for mischief,” notes Richard Harpel, director of federal relations for the National Association of State Universities and Land Grant Colleges. In part, that is because the draft guidelines are very subjective, says Joanne Carney, director of the Center for Science, Technology and Congress at the American Academy for the Advancement of Science. Robert Wells, president of the American Society for Biochemistry and Molecular Biology, expressed the views of many scientific societies when he pointed out that key terms in the guidelines are not defined: “OMB asked for comment on the definitions of the terms ‘quality,’ ‘utility,’ ‘objectivity,’ and ‘integrity’…· [but] we are unable to find any definitions of these terms in the proposed guidelines…·. It may seem to the drafters of this proposal that these terms are self-explanatory, but in fact they are not, at least as far as science and regulatory policy are concerned.” It isn't even clear who will be covered by the guidelines, which are silent on the question of applicability to federal grant recipients. “Any attempted federal restriction on dissemination of academic research would be wholly unacceptable in principle and would likely raise First Amendment considerations,” Heinig wrote. The guidelines “should specifically exclude academic and other non-federal institutions performing research under federal grants.” FASEB's Rich questioned OMB's proposal that government data “be substantially reproducible upon independent analysis.” “Who will conduct these [independent] studies and who will pay for them?” he wondered. “How can research studies [that] may have taken place over a period of years and used biological substances be ‘substantially reproduced’?” Rich also faulted OMB's proposal that federal agencies report the number and nature of complaints regarding their compliance with the guidelines. “The number of complaints received rather than the validity of the complaints could unfairly impact the reputation of an agency and//or its funded investigators,” he wrote. “A large number of complaints on a scientific matter could simply reflect a controversial issue…·rather than the excellence of the science.” The bottom line, Harpel says, is that by seeking to ensure high-quality scientific data, OMB could interrupt ongoing research and leave government agencies and their researchers open to harassment by special interests. That, he states, would “make it harder to be a scientist.”