The Electronic Disability Record: Purpose, Parameters, and Model Use Case
- aDepartment of Management, Worcester Polytechnic Institute, Worcester, MA
- bKay Center for E-Health Research, School of Information Systems and Technology, Claremont Graduate University, Claremont, CA
- Correspondence: Bengisu Tulu, Ph.D., Department of Management, Worcester Polytechnic Institute, 100 Institute Road, Worcester, MA 01609-2280; e-mail: <bengisu{at}wpi.edu>
- Received 20 February 2007
- Accepted 30 September 2008
Abstract
The active engagement of consumers is an important factor in achieving widespread success of health information systems. The disability community represents a major segment of the healthcare arena, with more than 50 million Americans experiencing some form of disability. In keeping with the “consumer-driven” approach to e-health systems, this paper considers the distinctive aspects of electronic and personal health record use by this segment of society. Drawing upon the information shared during two national policy forums on this topic, the authors present the concept of Electronic Disability Records (EDR). The authors outline the purpose and parameters of such records, with specific attention to its ability to organize health and financial data in a manner that can be used to expedite the disability determination process. In doing so, the authors discuss its interaction with Electronic Health Records (EHR) and Personal Health Records (PHR). The authors then draw upon these general parameters to outline a model use case for disability determination and discuss related implications for disability health management. The paper further reports on the subsequent considerations of these and related deliberations by the American Health Information Community (AHIC).
Footnotes
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Supported by the Kay Center for E-health Research at Claremont Graduate University. The authors thank Debbie Somers, David Lansky, Mary Jo Deering, Karen Bell, Martin Prahl, Kim Nazi, Sue Feldman, Sean Clennon, Deborah Lafky, Elaine Blechman, Susan Daniels, Eileen Elias, David Stapleton, Mark Haas, Nicole Garcia, and Richard Burkhard for their input and advice. The authors also thank Steeve Kay for the leadership and passion that he brings to this issue of disability.
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↵a http://www.hhs.gov/healthit/ahic/materials/meeting09/ce/b/williamcrawford.doc.
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↵b Consumer Empowerment Work Group Recommendations on Disabilities were approved by AHIC on Apr 22, 2008.
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↵c The podcasts of these events can be found at http://www.kaycenterpodcasts.org/.
