Dead or Alive: HIPAA’s Impact on Nursing Historical Research

Abstract

Access patient information is integral nursing historical research; the essential work of nurses cannot be separated from patient care. Yet the 1996 Rule of the Health Insurance Portability and Accountability Act (HIPAA), places new barriers between nurse historians and archival resources. HIPAA's principle of patient confidentiality places often onerous new restrictions on access patient records, whether from 200 years ago or from yesterday, whether patients are dead or alive. HIPAA also appreciably increases the workload and the responsibilities of medical archivists, underscored by their awareness that infractions may result in significant penalties for researchers and institutions alike. The broad and complex HIPAA privacy rule has undoubtedly led some medical archives closing all or part of their collections in order adhere the letter of the law and avoid the stress and expense of compliance. Collecting institutions may refuse accept materials with identifying patient information. At worst, institutions might simply destroy documents with identifying patient information rather than preserve them for their intrinsic value and deal with the implications of access under HIPAA. This inexpensive and expedient response HIPAA compliance would be a significant loss any medical history collection. Already nurses' notes are often destroyed before patients' records are filed or microfilmed. Thus the HIPAA Rule has the potential seriously affect the ability of nursing historians conduct research involving patient care. Given the uncertainties of how strictly HIPAA will be enforced, many health care providers are opting for the most stringent (and often most impractical) interpretation of the regulations. This chapter briefly describes HIPAA's potential impact on bio-medical research and then more fully discusses HIPAA's effect on historical research. It then explains how medical archives are working within these regulations allow researcher access. Areas of special concern and confusion are also addressed. It must be emphasized that legal opinion related archival research varies over interpretation of ambiguities found in the HIPAA Rule. Naturally, archivists have sought legal counsel from their specific institutions guide the implementation of the law in their archives. Therefore some of the HIPAA privacy interpretations cited here may not be followed in quite the same way at all archives. HIPAA and Biomedical Research HIPAA was designed optimize health care for U.S. workers by making it easier obtain and retain health insurance coverage. One part of HIPAA mandated federal guidelines protect personal health information, known as Protected Health Information (PHI), from being inappropriately revealed insurance companies or employers. In compliance with HIPAA, the Secretary of the Department of Health and Human Services (DHHS) announced its proposed privacy regulations in 1999.1 Following public comment, these regulations, termed the Privacy Rule, were first issued in 2000 and a modified version, following further extensive public comment, was released in 2002. The purpose of the privacy rule was to protect the privacy of health information that identifies individuals who are living or deceased.2 Most institutions were required comply with the new regulations by April 14, 2003. The effect of the HIPAA privacy rule on research has raised a tremendous outcry from biomedical researchers. The de-identification of patient records, particularly in paper records, presents a formidable task. Researchers are particularly concerned that the complexities of HIPAA compliance and penalties for disclosure or other errors, may force medical institutions deny researchers access patient data.3 The Association of American Medical Colleges cautioned that the privacy rule will hamper research associated with clinical trials, the study and treatment of disease, epidemiology, and genetics. …