Web of laws affect data sharing

Researchers highlight legal obstacles in cross-sector data sharing to improve public health research while protecting subject privacy
July 17, 2019

The recent decades have brought exponential growth to the amount of data collected on virtually every person. This is apparent in public health research, which has steadily grown its reliance on data analysis to correctly identify and address problems. However, sharing data across different sectors, ranging from health care systems to state and local governments, can be challenging thanks in part to an inconsistent and often confusing framework of legal protections.

In a new paper published in the Journal of Law, Medicine and Ethics, Cason Schmit, JD, research assistant professor in the Health Policy and Management Department at the Texas A&M School of Public Health, joins colleagues in describing some of the 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. Additionally, Schmit and colleagues highlight the need for a new legal framework that can facilitate helpful data sharing while protecting the privacy of everyone involved.

Cross-sector data sharing can be challenging because data are protected by laws at both the state and federal level that provide varying levels of protection depending on the type of data in question, how it was collected, who controls it and what the intended use of the data is. Such laws are in place mainly to protect the privacy of those in the data, and, as such, many laws focus on identifiable data.

However, 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 in data sharing 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, despite the limitations presented by the morass of laws and lack of a clear legal framework, researchers have successfully used cross-sector data sharing to identify and address public health issues. In 2016, three county health departments in Illinois—Peoria, Tazewell and 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.

Through these processes the researchers were able to discover trends in mental health and substance abuse issues related to health care, public health and law enforcement and emergency services groups. Their findings confirmed that a small number of people were involved in a disproportionately large number of cases, which enabled targeted interventions to help those people. Such improved interventions not only promise improved public health, but also stand to decrease public spending in the form of hospitalization or incarceration.

This effort shows what can be accomplished through sharing data across sectors and highlights the hard work and dedication of those involved in the two-year project. Such a success provides a concrete example of how useful data sharing can be. However, the legal obstacles the research team had to negotiate also point to the need for legal frameworks that can help researchers share data across sectors to improve their research while protecting subject privacy.

“As the volume of data collected on each of us continues to grow, and as data analysis becomes more sophisticated, such cross-sector work will likely become more common and necessary, further adding to the call for such a framework,” Schmit said.

— Rae Lynn Mitchell

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