ASIS&T 2006 - ENHANCING THE EAD: ENCODED ARCHIVAL DESCRIPTION OF SENSITIVE MEDICAL DATA

ENHANCING THE EAD: ENCODED ARCHIVAL DESCRIPTION OF SENSITIVE MEDICAL DATA

Catherine Arnott Smith, PhD, School of Information Studies, Syracuse University Nancy McCall, Archivist, Alan Mason Chesney Medical Archives, Johns Hopkins Medical Institutions

ASIS&T Annual Meeting - 2006 (ASIS&T 2006)
Austin, Texas, November 3-9, 2006

Abstract

Electronic health records (EHRs) will present a significant challenge to archivists and researchers. The EHR is a “container for a set of transactions”: both persistent (historical data pertaining to one patient, with long-term value); and event (EKG tracings of that one patient on one morning in the clinic, with short-term value.) The central role of EHRs in the electronic healthcare environment is a major theme of the proposed National Health Information Infrastructure (http://aspe.hhs.gov/sp/nhii/). However, the development and maintenance of EHRs, and, logically, the preservation of EHRs for access by future generations now takes place in a climate of extreme sensitivity towards patient privacy. HIPAA (the Health Information Portability and Accountability Act of 1996; Public Law 104-191) imposes severe financial penalties for unauthorized release of personal health information (PHI).

This poster presents preliminary results of a study that uses the CDA standard as a translating mechanism to facilitate identification of PHI in electronic health records. The researchers have developed a HIPAA-aware EAD finding aid for use with electronic health record collections. This finding aid will provide information to future users of such collections about what HIPAA-regulated data elements are present and where in the document they reside. This work can further archivists’ understanding of (1) the location and frequency of potentially HIPAA-sensitive data in historic documents, and (2) potentially sensitive types of historical medical records. The HIPAA-aware EAD finding aid is also being tested and refined for goodness of fit with representative documents of different types found in the historical collections at the Alan Mason Chesney Historical Archives, Johns Hopkins Medical Institutions. The collections include those of William S. Halsted, the father of American surgical education; pioneer psychobiologist Adolf Meyer; and the important urologist Hugh Hampton Young.

The ultimate product of this research project will be a twin set of finding aid templates, EAD-compliant and HIPAA-aware, for use with clinical documents both digital and paper-based, contemporary and historical. Beyond tool development, however, both archives and medical informatics stand to profit from increased understanding of our clinical documents. Health information is a more highly regulated commodity than ever and health information policy must be integrated into health information practice. An understanding of how much EHR content is and is not accessible to future researchers in a HIPAA climate will enable researchers and archivists alike to explore the riches of the clinical data in contemporary and historical records, while continuing to safeguard the privacy of the public. Comparison of the similarities and differences in clinical content between electronic health records and their print precursors will inform our understanding of both these media.

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