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Legal Issues Concerning Identifiable Health Data Sharing Between State/Local Public Health Authorities and Tribal Epidemiology Centers in Selected U.S. Jurisdictions : a report for the Council of State and Territorial Epidemiologists (CSTE)
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11/08/2011
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Description:Original Draft as of March 30, 2009; Revised by CSTE (with author overview) as of November 8, 2011
Identifiable health data are the lifeblood of public health surveillance and other activities. Their use is essential to effective public health activities and public health research. Public health authorities at all levels of government seek increasingly greater types and volume of personally identifiable health information, including through data exchanges between public health entities. Too often, however, acquisition and use of identifiable health information through existing public health databases are restricted or limited by privacy norms or other policies. Public health authorities might be reticent to share identifiable health data, even for legitimate public health purposes, because of concerns about individual privacy or legal interpretations of privacy laws. As a result, public health entities can lack access to health data to conduct essential services and research.
Although the veracity of this observation extends to multiple data-sharing practices, tribal public health authorities such as Tribal Epidemiology Centers (TECs) nationally have reported extensive limitations concerning data sharing with state or local public health authorities. Funded by the U.S. Indian Health Service (IHS), the nation’s 12 TECs work in partnership with tribal governments or tribal government coalitions. Each TEC is designated to serve the American Indian/Alaska Native (AI/AN) population within one of the 12 IHS administrative areas, although one TEC serves two IHS areas and another TEC serves urban AI/AN populations throughout the nation. TECs rely on the sharing of existing public health data accumulated by federal, state, or local governments to conduct a variety of epidemiologic activities to improve tribal health. In March 2010, the Indian Health Care Improvement Act (IHCIA) was permanently reauthorized and required that TECs be treated as public health authorities for purposes of the Health Insurance Portability and Accountability Act (HIPAA) of 1996.
At a meeting in Albuquerque in May 2008, the CSTE Tribal Epidemiology Subcommittee identified a series of action items and recommendations to improve public health surveillance in Indian Country. Among these recommendations is the need to better understand and encourage data sharing between TECs and state health departments. On the basis of reports from the field discussed during this meeting, TEC authorities consistently face hindrances in gaining access to state/local public health data. These barriers to data sharing predominately originate from privacy-related concerns among state/local authorities in releasing identifiable heath data to tribal entities.
In November 2008, CSTE asked the Centers for Law and the Public’s Health: A Collaborative at Johns Hopkins and Georgetown Universities to research and assess state laws in a geographically representative sample of states with federally recognized tribes....
This publication was supported by Cooperative Agreement Number 5U38HM000414-04. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of CDC.
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Pages in Document:31 numbered pages
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