178678 A standards based information infrastructure for rare bleeding and clotting disorders

Tuesday, October 28, 2008

Ann Forsberg, MPH , UMass Memorial Hospital, New England Hemophilia Center, Worcester, MA
Lewis H. Parker, MBA MSIS , EarthVectors Inc., Denver, CO
Julie Thomas, RN, BSN , Hemostasis-Thrombosis Clinic, Vanderbilt University Medical Center, Nashville, TN
Diane J. Aschman on behalf of ATHN , American Thrombosis and Hemostasis Network, Riverwoods, IL
Background: Specialists in rare disorders often lack the financial and technical resources to take advantage of the technological explosion in medical informatics and the interoperability standards being promulgated by HHS. The American Thrombosis and Hemostasis Network (ATHN) is a non profit organization created in 2006 to provide stewardship of a secure national web-based database to support the federally-funded hemophilia treatment centers (HTCs) in clinical outcomes analysis, research, advocacy and public health reporting in the hemostasis and thrombosis community.

Objective: To develop methods that support the creation of a national database system, and financial support for data managers and training to meet the increasing data demands placed upon the 130 federally-funded HTCs throughout the U.S.

Methods: ATHN is assisting the HTCs to deploy a new web-based infrastructure that uses an ASP model with strong security provisions, integrates interoperability standards such as SNOMED CT and disaster preparedness capability. To determine nationwide electronic database infrastructure gaps, ATHN implemented a national needs assessment survey in 2008.

Results: The assessment revealed that 79% of HTCs collect some clinical care and research data electronically and would use the web-based database for CDC mandated surveillance reporting. 55% currently generate standard electronic reports and 27% create custom reports. One HTC downloads lab data. Only 29% of HTCs report being adequately staffed to gather data electronically. Others report being inadequately trained to handle routine maintenance and redundant back up.

Conclusion: Although the majority of HTCs indicate a need for a national database, significant infrastructure support for training and technical assistance is required. In an era of decreasing or flat federal grant dollars, ATHN is a model public/private collaboration that will fast track and streamline the infrastructure creation and implementation. The approach can serve as a model for other geographically dispersed, disease focused providers of last resort.

Learning Objectives:
1. Describe two ways in which the ATHN infrastructure aligns with the strategic direction of HHS and the U.S. interoperability standards. 2. Describe three ways the Hemophilia Treatment Center network will utilize the national ATHN database. 3. List two major challenges faced and lessons learned in partnering with government agencies in the creation of a Web-based database. 4. Identify three characteristics of the infrastructure that make it a potential model for other providers.

Keywords: Information Technology, Community Collaboration

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: As chair of the ATHN Technology committee, founding member of the ATHN Board and Region 1 Administrator for CDC cooperative agreement, I was involved in the development and implementation of this informatin infrastructure.
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.

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