A Challenge to Public Health Surveillance Interoperability and Clinical Research

The obstacles that impact interoperability of the disease surveillance systems starts with the issue of balance between the public interest in the collection of information and the privacy rights. In theory, properly utilized, surveillance is a fundamental government activity, indispensable in nature (Gostin & Gostin, 2000). The legal complications brought about by the Fourth Amendment prohibition against unreasonable searches and seizures, triggered the social impetus behind HIPAA and the HHS Report. The Fourth Amendment is a constitutional protection against wrongful enforcement of the law on access to private medical records. These offers insight into the growth and development of non-Fourth Amendment protections for medical records privacy, and examines later actions that appear to restrict or undercut these potential medical record protections. The shared goals of both public health surveillance and the protection of health information privacy will encourage individuals to fully utilize health services and cooperate with health agencies. The key to protecting the well-being of the community is the optimum balance between public health activities and privacy protection. This balance is challenged by the enactment and enforcement of current legislation such as the Health Insurance Portability and Accountability Act’s Privacy (HIPAA). The way public health exception of HIPAA Rule was drafted resulted to confusion and put this balance in jeopardy, as well as recognized reluctance to provide information to state and local public health agencies. Wilson (2009) stated that the exception ambiguously defines the role of public health authorities in maintaining the privacy of personally identifiable health information. Incertitude about privacy can be equipoised by initiatives by state and federal policy makers such as the report “Confidentiality of Individually-Identifiable Health Information” issued by the Department of Health and Human Services (HHS).  This report reflected a legitimate interpretation and representation of the best aspects of constitutional and judicial protections of medical records privacy using current innovative technology in health information and communication.

State, local, and tribal public health authorities shares the privacy challenges that are inherent in data sharing. Wilson (2009) stated that, in the process of promulgating the Privacy Rule, HHS recognized the need to inscribe an exception for public health purposes in order to allow authorities at all levels of government to continue to collect, analyze, and use health information that would otherwise be unavailable without prior patient consent. State courts and policy makers have produced some protection for individuals’ medical histories which are characterized more by their diversity and conflicting standards than by the quality of protection. Unfortunately, state laws offer little additional support for medical records protection from law enforcement intrusion, thereby it is paramount for continued collaboration between public health professionals, health leaders and policy makers to focus on needed amendments to protect the interest of both the public, patients and researchers which will then bridge the divide on the interpretation of the law. It is critical to acknowledge that challenge of law- and policy-makers in finding common ground between individual privacy expectations and the communal health authorities’ needs for identifiable health data. The dissemination and use of identifiable health data for public health purposes are typically supported by the public, but it relies on how the government and other entities maintain appropriate privacy and security protections in acquiring the data. It is warranted for the continued improvement on the level of protection afforded to the public and patients by state laws governing medical records privacy. Moral justifications should be considered in establishing firm, consistent set of rules governing law enforcement’s use and exchange of private medical records and data needed in clinical research. The obstacles that forestall data-sharing practices should be assessed and remedied within each jurisdiction. Legal interpretations should be openly discussed to properly develop and implement model policy to strengthen disease surveillance, and increase the efficiency of data-sharing practices between researchers and public health authorities at all levels.

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