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Member Research and Reports

Member Research and Reports

Texas A&M: Researchers Highlight Legal Obstacles in Cross-sector Data Sharing to Improve Public Health Research While Protecting Subject Privacy

In a new paper in the Journal of Law, Medicine and Ethics, MR. Cason Schmit, of the Texas A&M School of Public Health, describes legal obstacles facing cross-sector data sharing. The paper also examined how one data-sharing effort overcame some of these challenges to get a clearer view how mental health care issues affect the community and improve delivery of necessary services. Also, the need for a new legal framework that can facilitate helpful data sharing while protecting the privacy of everyone involved is highlighted.

An analysis noted that 22 separate federal laws had differing standards for identifiable data, with some only focusing on direct identifiers such as names and others concerned with information that could be connected to an individual as well. These inconsistencies, and similar ones at the state level, can lead data owners to err on the side of caution and strip more data than might be necessary.

Another obstacle is the frequent absence of specific language authorizing the use of data for research purposes. Of the 22 laws analyzed, only four had public health exceptions and 13 allowed at least limited research use of data. Thus, a comprehensive framework that clearly authorizes public health and research use would be beneficial for public health efforts to build a healthier population.

However, in 2016, three county health departments in Illinois — Peoria, Tazewell & Woodford counties—developed a data-driven plan to reduce substance abuse and improve mental health. The research team was able to overcome legal barriers and address varying protection levels by sending data from different sources to the Peoria Health Department, which handled the data. Such a success provides a concrete example of how useful data sharing can be.

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