Online Program

Utilizing national electronic data infrastructure to longitudinally follow the United States (US) bleeding disorders population

Monday, November 4, 2013

Marilyn Manco-Johnson, MD, University of Colorado Anschutz Medical Campus, University of Colorado Hemophilia and Thrombosis Center, Aurora, CO
Rebecka Dudley, LCSW, American Thrombosis and Hemostasis Network, Riverwoods, IL
Meredith Oakley, DVM, MPH, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA
Michael Recht, MD, PhD, The Hemophilia Center at OHSU, Child Development & Rehabilitation Center, Oregon Health & Science University, Portland, OR
Suzanne Kapica, MA, LPC, Hemophilia Foundation of Michigan, Ypsilanti, MI
Vanessa Byams, MPH, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA
Diane Aschman, MS, American Thrombosis and Hemostasis Network, Riverwoods, IL
Background – The US Hemophilia Treatment Center (HTC) Network along with the Centers for Disease Control and Prevention are creating the next generation bleeding and clotting disorder surveillance tool, building upon their previous experience with robust, adaptive data systems. Purpose - To share the iterative and collaborative community-based development strategy, testing process and methods as applied to key outcomes for surveillance utilizing electronic health records (EHR). Methods – Two surveillance tools, HTC Population Profile and Registry for Bleeding Disorders, developed with broad community, scientific and administrative input, leverage a national, multipurpose web-based infrastructure to create a HIPAA compliant limited data set drawn from 14,000+ patients with rare bleeding and clotting disorders. The HTC Population Profile collects limited, de-identified data describing the overall HTC population. The Registry collects more comprehensive data from a subset of HTC patients with eligible disorders. These surveillance tools are prepopulated from an EHR system housed under the stewardship of the American Thrombosis and Hemostasis Network. This patient-level record captures demographics; clinical information (e.g., diagnosis, severity, treatment); key outcomes and complications (chronic pain and related opioid use, inhibitory antibodies, HIV, hepatitis); genetics; and patient reported outcomes (bleeding, activity limitations). Results – Feasibility studies of both tools have been completed. To date, over 10,300 population profiles representing patients from 56 of 130 treatment centers have been extracted for use. These data, when combined with data from the Registry, will enable the network to: 1) provide descriptive knowledge about demographics, diagnoses, complications, and health service utilization of populations with bleeding disorders; and 2) monitor over time medical practices/outcomes including use of preventive therapies, immunization rates, and adverse events. Conclusion – Use of a standardized electronic national data infrastructure may help in monitoring key health indicators and emerging issues among persons with rare bleeding and clotting disorders and improving outcomes.

Learning Areas:

Chronic disease management and prevention
Communication and informatics

Learning Objectives:
Discuss a model for using HIIT to longitudinally follow healthcare and outcomes in a bleeding disorders population. Apply the bleeding disorders model to other rare disorder surveillance projects. Describe stakeholder participation in development of national surveillance project utilizing HIIT.

Keyword(s): Collaboration, Health Information Systems

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have served as the Surveillance Project Manager for the project reported in the abstract. In this capacity I have worked closely with the scientific investigator and the study groups that developed and implemented the iterative process in selection of outcomes for surveillance, developed the content, and continuously reviewed the feedback and results from the project described in the abstract.
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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