Leveraging an electronic health information infrastructure for disaster preparedness

Background: Individuals with high risk rare bleeding and thrombotic disorders are particularly vulnerable if treatment by their usual caregivers becomes disrupted abruptly due to a disaster situation. A relatively small amount of accurate information can be lifesaving and cost-saving in the short-term and avoid longer term complications. ATHNready, a disaster preparedness program, was developed by the American Thrombosis and Hemostasis Network (ATHN) with federally-funded treatment centers under a cooperative agreement from the CDC. Objective: To leverage a new web-based health information infrastructure for disaster preparedness across a diverse network of 130+ hemophilia treatment centers, drawing on the lessons learned from Hurricane Katrina. Methods: Federally-funded centers treating rare bleeding and thrombotic disorders impacted by Hurricane Katrina and other natural disasters were debriefed to identify ways that a new clinical information infrastructure could be leveraged to minimize morbidity and mortality and restore care to pre-disaster levels. Three innovations emerged: 1) the ATHNready: Personal Health Report produced from core data captured using the infrastructure and provided to patients on a wallet-sized flash drive; 2) an interactive HTC Finder that helps patients locate another HTC anywhere in the US, determine hours of operation and find contact information; and 3) a template Care Continuity Plan with procedures for transferring patient records across centers. Patient privacy was a key concern. Results: The tools deployed at selected pilot sites resulted in favorable responses from the provider and patient communities. Conclusion: ATHNready, which leverages a new web-based information infrastructure shows great promise for effective disaster preparedness and recovery.