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Access to patient information is integral to nursing historical research; the essential work of nurses cannot be separated from patient care. Yet the 1996 Privacy 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 to 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 to some medical archives closing all or part of their collections in order to adhere to the letter of the law and avoid the stress and expense of compliance. Collecting institutions may refuse to 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 to HIPAA compliance would be a significant loss to any medical history collection. Already nurses' notes are often destroyed before patients' records are filed or microfilmed. Thus the HIPAA Privacy Rule has the potential to seriously affect the ability of nursing historians to 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 to allow researcher access. Areas of special concern and confusion are also addressed. It must be emphasized that legal opinion related to archival research varies over interpretation of ambiguities found in the HIPAA Privacy Rule. Naturally, archivists have sought legal counsel from their specific institutions to 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 to...