For syndromic and related public health surveillance systems to be effective, state and local health departments and the Centers for Disease Control and Prevention (CDC) need access to a variety of types of health data. Since the development and implementation of syndromic surveillance systems in recent years, health departments have gained varied levels of access to personal health information for inclusion in these systems. A variety of federal, state, and local laws enable, restrict, and otherwise infl uence the sharing of health information between health care providers and public health agencies for surveillance, as well as research, purposes. Some health care providers have expressed reluctance or refused to provide identifi able data for syndromic surveillance to health departments (1), citing state privacy laws or the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule (2). Although the HIPAA Privacy Rule permits health care providers to disclose protected health information without patients’ consent to public health agencies for authorized purposes, it does not supersede state laws that provide greater protection of individual privacy (2,3). The use of individuals’ health information for syndromic surveillance poses challenging questions regarding the interpretation and future development of ethical and legal standards for public health practice and research. While the practice of syndromic surveillance extends the longstanding tradition of public health surveillance as an essential element of public health practice (4), it raises in a new light equally longstanding questions about governments’ authority to collect and use health information (5). As the practice of syndromic surveillance evolves, it is in the national interest to clarify the conditions under which health information can be shared, the ways that privacy and confi dentiality can be protected, and the ways that local, state, and federal public health agencies can legally, ethically, and effectively exercise their respective responsibilities to detect, monitor, and respond to public health threats.
HIPAA
A report jointly released by the de Beaumont Foundation and Johns Hopkins University, Using Electronic Health Data for Community Health: Example Cases and Legal Analysis provides public health departments with a framework that will allow them to request data from hospitals and health systems in order to move the needle on critical public health challenges.
The Research Electronic Data Capture (REDCap) application has been used to build and manage online surveys and databases in academic research settings. Public health agencies have begun to use REDCap to manage disease outbreak data. In addition to survey and database development, and data management and analysis, REDCap allows users to track data manipulation and user activity, automate export procedures for data downloads, and use ad hoc reporting tools and advanced features, such as branching logic, file uploading, and calculated fields. REDCap supports HIPAA compliance through userbased permissions and audit trails. These additional capabilities may provide an advantage over commonly used outbreak management tools such as Epi Info and Microsoft Access. The Illinois Department of Public Health (IDPH) has not used REDCap to date. Prior to adopting this web-based application, an evaluation was conducted to assess how REDCap may facilitate outbreak data management.
Objective
To evaluate the use of the Research Electronic Data Capture (REDCap) application to manage outbreak data at the local, state, and multi-jurisdictional level.
An Online Training Course
ISDS, in partnership with the Tufts University School of Medicine and Tufts Health Care Institute, has created an online course in syndromic surveillance. This program is designed to increase knowledge and foster collaboration between public health and clinical practitioners new to syndromic surveillance. This training is divided into four one-hour, self-paced modules and is available at no cost. Each module consists of a set of narrated slides.