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Excerpted From: Samantha Bent Weber, Amanda Moreland, Rachel Hulkower andTara Ramanathan Holiday, Examining Sociodemographic Data Reporting Requirements in State Disease Surveillance Systems, 14 Saint Louis University Journal of Health Law & Policy 571 (2021) (66 Footnotes) (Full Document)


Since the inception of disease surveillance in the United States, the legal foundation for tracking and monitoring the occurrence of disease and injury within a population has been established through a combination of laws and policies at various governmental levels. The Centers for Disease Control and Prevention (CDC) houses the country's most expansive disease surveillance systems, including the National Notifiable Diseases Surveillance System (NNDSS). The NNDSS receives case-level data from fifty-seven public health jurisdictions, including states, localities, and territories, for the approximately 120 diseases and conditions that comprise the National Notifiable Conditions. This disease surveillance system relies upon the jurisdictions' voluntary submission of data on infectious and noninfectious diseases and conditions that have been deemed notifiable. Jurisdictions remove information that would identify the individual before submitting these data to CDC for use by the disease-specific programs, which support state, local, and territorial public health departments. This surveillance system plays a critical role in monitoring, preventing, and controlling the incidence of disease and injury across the country.

Foundational to the NNDSS are the state, local, and territorial laws and policies that require healthcare providers, healthcare facilities, laboratories, and others to submit information on reportable diseases and conditions to the state, local, or territorial public health department. Each state, locality, and territory has the legal authority to enact laws that determine which conditions are reportable within its own jurisdiction, in addition to who must report and the methods for reporting. As such, the list of mandatory reportable diseases and the manner in which they are reported vary by jurisdiction. Many, though not all, reportable diseases are also on the NNDSS list of Nationally Notifiable Conditions. The collection and dissemination of disease reporting data from each jurisdiction is essential to the compilation of case notification information that comprises NNDSS and other national surveillance systems.

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Disease reporting laws serve a vital role in facilitating the creation of comprehensive, illustrative datasets that can be used to monitor, respond to, and prevent future disease and injury. State disease reporting systems contribute to the utility and reliability of NNDSS and similar surveillance systems, which can be employed to better understand, and ultimately correct, disproportionate burdens of disease and injury across populations. A robust collection of sociodemographic information can inform public health professionals and policymakers about how best to target interventions and resources, as well as monitor progress and efficacy of these interventions over time. Sociodemographic information in disease data can identify those populations that face substantial morbidity and mortality risk and that may encounter the most challenging structural and institutional barriers to avoiding or overcoming that risk.

As the world faces new public health threats and emerging infectious diseases with the capacity to spread quickly, the need for early warning systems and rapid public health response becomes even more imperative. Disease surveillance systems equipped with sociodemographic data can help address the factors that lead to disproportionate health outcomes. To successfully address these inequities, public health must develop tools and an evidence base that accurately depict the myriad ways that sociodemographic factors affect one's health.

Samantha Bent Weber, JD, is a Public Health Analyst at the Office of Public Health Law Services, Center for State, Tribal, Local, and Territorial Support, CDC.

Amanda Moreland, JD, MPH, is a Public Health Analyst with DRT Strategies, supporting the Office of Public Health Law Services, Center for State, Tribal, Local, and Territorial Support (CSTLTS), CDC.

Rachel Hulkower, JD, MSPH, is a Public Health Advisor at the National Center for Injury Prevention and Control, CDC.

Tara Ramanathan Holiday, JD, MPH, is a Public Health Analyst at the Office of Public Health Law Services, Center for State, Tribal, Local, and Territorial Support, CDC.

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