This article reports on a study of laws, regulations, and policies governing Immunization Information Systems (IIS, also known as “immunization registries”) in states and selected urban areas of the United States. The study included a search of relevant statutes, administrative codes and published attorney general opinions/findings, an online questionnaire completed by immunization program managers and/or their staff, and follow-up telephone interviews.
The legal/regulatory framework for IIS has changed considerably since 2000, largely in ways that improve IIS' ability to perform their public health functions while continuing to maintain strict confidentiality and privacy controls. Nevertheless, the exchange of immunization data and other health information between care providers and public health and between entities in different jurisdictions remains difficult due in part to ongoing regulatory diversity.
To continue to be leaders in health information exchange and facilitate immunization of children and adults, IIS will need to address the challenges presented by the interplay of federal and state legislation, regulations, and policies and continue to move toward standardized data collection and sharing necessary for interoperable systems.
This study aims at obtaining information relating to legislation, regulations, rules, and policies (collectively referred to as “laws”) that enable, support, or constrain the ability of an IIS to receive or disclose immunization information for both children and adults and to assess trends with regard to these laws.
Immunization Information Systems Support Branch, Immunization Services Division, National Center for Immunization and Respiratory Diseases, Centers for Disease Control and Prevention, Atlanta, Georgia (Mr Martin); Public Health Informatics Institute, Decatur, Georgia (Ms Lowery); Public Health Informatics Institute, Decatur, Georgia (Mr Brand); National Center for Immunization and Respiratory Diseases, Centers for Disease Control and Prevention, Atlanta, Georgia (Ms Gold); and Office of the Associate Director for Science, Centers for Disease Control and Prevention, Atlanta, Georgia (Ms Horlick).
Correspondence: Daniel W. Martin, MSPH, Immunization Information Systems Support Branch, Immunization Services Division, NCIRD, Centers for Disease Control and Prevention, 1600 Clifton Road, Mailstop A-19, Atlanta, GA 30333 (firstname.lastname@example.org).
The authors thank the Immunization Information System managers, immunization program managers, and other staff of the immunization programs in the state and urban health departments who responded to their surveys to provide the raw data for this study. In addition, the authors thank Janet Kelly, MPH, RN, for her participation in the planning phase of this project.
The findings and conclusions in this report are those of the authors and do not necessarily represent the views of the Centers for Disease Control and Prevention.
Data gathering and analysis were conducted by the Public Health Informatics Institute, Decatur, Georgia, under cooperative agreement no. HM08-080502CONT12 from the Centers for Disease Control and Prevention.
All authors report they have no financial or other conflicts of interest to disclose.
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