A National Survey of Immunization Programs Regarding Immunization Information Systems Data Sharing and Use

To determine and characterize practices regarding data sharing and usage (particularly for research) in immunization information systems (IISs), as well as barriers to using such data for research. We surveyed immunization program managers (IPMs) associated with all 64 Centers for Disease Control and Prevention grantee immunization programs (IPs) between July and September 2012. More than 95% of IPMs (61/64) responded. The top 2 barriers reported by IPMs to using IIS data for research were insufficient time and too few employees, irrespective of whether or not the jurisdiction reported using data for research purposes. Those IPMs who agreed with the statement "Research is part of the mission of an immunization program" were more likely to report using data for research (P = .045). Among those who responded, the most common kind of IIS research conducted involved determinants of vaccination coverage (n = 24/26; 92%). A greater percentage of IPMs in jurisdictions that reported using IIS data for research reported having data-sharing agreements in place. Those IPs that have used IIS data for research were more likely to report online IIS provider enrollment, integration with insurance company records, and integration with hospital records. Alternatively, IPs that did not report using IIS data for research were more likely to have IISs with modules addressing topics such as adverse event reporting, smallpox, and first-responder vaccination. Staff size and time were the 2 most cited barriers to conducting research with IIS data. Therefore, focus should also be placed on providing IPs with the resources needed to conduct such research.