For syndromic and related surveillance systems to be effective public health tools, state and local health departments and CDC need access to a variety of types of health data. However, since the development and implementation of syndromic surveillance systems began in recent years, experience in gaining access to personal health data has been mixed. Although some have argued that the HIPAA Privacy Rule permits data owners to disclose protected health information to public health authorities, covered entities have cited HIPAA in refusing to provide data to researchers and health departments. In addition to HIPAA, a variety of federal, state, and local public health laws enable, restrict, and otherwise influence the ability to share data for public health surveillance purposes. Concerns about protecting proprietary data also influence data sharing for public health purposes. It is in the national interest to clarify the conditions under which data can be shared, balancing privacy and confidentiality with the ability of public health agencies at all levels of jurisdiction to access information needed to protect the public from disease. As the practice of syndromic surveillance evolves, it is equally important to assure that data are collected and used ethically as well as legally. The methods and uses of syndromic surveillance pose challenging questions regarding the interpretation and future development of ethical and legal standards for public health practice and research. The discussion will not be confined to the legal and ethical issues surrounding the release of data but will also address these issues as they concern the subsequent transmission, storage, replication, and display of health data by local, state, and federal public health users, including how the information is used for both early event detection and situational awareness functions.
Objective
The International Society for Disease Surveillance will convene a group of experts to: (1) share experience with privacy, confidentiality, and other legal and ethical issues in syndromic surveillance; (2) clarify the research, practice, legal, and ethical issues that enable and restrict data sharing; and (3) identify approaches to overcoming barriers in a way that protects privacy and confidentiality while maximizing the usefulness of syndromic and related surveillance systems.