Abstract

BackgroundText-based patient medical records are a vital resource in medical research. In order to preserve patient confidentiality, however, the U.S. Health Insurance Portability and Accountability Act (HIPAA) requires that protected health information (PHI) be removed from medical records before they can be disseminated. Manual de-identification of large medical record databases is prohibitively expensive, time-consuming and prone to error, necessitating automatic methods for large-scale, automated de-identification.MethodsWe describe an automated Perl-based de-identification software package that is generally usable on most free-text medical records, e.g., nursing notes, discharge summaries, X-ray reports, etc. The software uses lexical look-up tables, regular expressions, and simple heuristics to locate both HIPAA PHI, and an extended PHI set that includes doctors' names and years of dates. To develop the de-identification approach, we assembled a gold standard corpus of re-identified nursing notes with real PHI replaced by realistic surrogate information. This corpus consists of 2,434 nursing notes containing 334,000 words and a total of 1,779 instances of PHI taken from 163 randomly selected patient records. This gold standard corpus was used to refine the algorithm and measure its sensitivity. To test the algorithm on data not used in its development, we constructed a second test corpus of 1,836 nursing notes containing 296,400 words. The algorithm's false negative rate was evaluated using this test corpus.ResultsPerformance evaluation of the de-identification software on the development corpus yielded an overall recall of 0.967, precision value of 0.749, and fallout value of approximately 0.002. On the test corpus, a total of 90 instances of false negatives were found, or 27 per 100,000 word count, with an estimated recall of 0.943. Only one full date and one age over 89 were missed. No patient names were missed in either corpus.ConclusionWe have developed a pattern-matching de-identification system based on dictionary look-ups, regular expressions, and heuristics. Evaluation based on two different sets of nursing notes collected from a U.S. hospital suggests that, in terms of recall, the software out-performs a single human de-identifier (0.81) and performs at least as well as a consensus of two human de-identifiers (0.94). The system is currently tuned to de-identify PHI in nursing notes and discharge summaries but is sufficiently generalized and can be customized to handle text files of any format. Although the accuracy of the algorithm is high, it is probably insufficient to be used to publicly disseminate medical data. The open-source de-identification software and the gold standard re-identified corpus of medical records have therefore been made available to researchers via the PhysioNet website to encourage improvements in the algorithm.

Highlights

  • Text-based patient medical records are a vital resource in medical research

  • In the United States the Health Insurance Portability and Accountability Act (HIPAA) [2] specifies 18 specific categories of information that must be removed from medical records to be used in research

  • We have demonstrated that manual de-identification by medical professionals is prohibitively timeconsuming, expensive [3], and unreliable [4]. (We found that resident clinicians could de-identify at a rate of about 18,000 words, or 90 incidents of protected health information (PHI), per hour.) De-identification performance tends to be highly variable and error prone [4]

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Summary

Introduction

In order to preserve patient confidentiality, the U.S Health Insurance Portability and Accountability Act (HIPAA) requires that protected health information (PHI) be removed from medical records before they can be disseminated. Introduction A wide range of medical research – from epidemiology to the design of decision support systems – relies on medical records [1] For both legal and ethical reasons, it is necessary to preserve patient confidentiality. In the United States the Health Insurance Portability and Accountability Act (HIPAA) [2] specifies 18 specific categories of information that must be removed from medical records to be used in research. This identification of PHI could be conducted manually by clinicians or persons familiar with medical terms, by automated de-identification software, or by a combination of software and expert oversight. Large-scale accurate de-identification requires automated software that is fine-tuned to the structure of the text, the content of the medical records, and the specific requirements of a particular project

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