202769 Leveraging an electronic health information infrastructure for disaster preparedness

Monday, November 9, 2009

Ann Forsberg, MA MPH , Hemophilia Treatment Center Program, UMass Memorial Hospital, Worcester, MA
Diane J. Aschman, MS , American Thrombosis and Hemostasis Network, Riverwoods, IL
Steven Humes, MM MPH , Hemophilia Diagnostic and Treatment Center, University of North Carolina at Chapel Hill, Chapel Hill, NC
Tami Wood-Lively, JD, MHA , Hemophilia Foundation of Michigan, Ypsilanti, MI
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.

Learning Objectives:
1. Describe three ways that a web-based health information infrastructure can be leveraged for disaster preparedness in a national treatment center network. 2. Identify key privacy concerns and workflow issues that presented challenges in the operational design of the program.

Keywords: Information Technology, Disasters

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am the Program Steering Committee Chair for the ATHNready program funded by CDC
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.