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Privacy and Anonymity Challenges When Collecting Data for Public Health Purposes

Published online by Cambridge University Press:  01 January 2021

Khaled El Emam  and
Ester Moher
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Extract

Even though health care provider reporting of diseases to public health authorities is common, often there is under-reporting by providers, including for notifiable diseases; frequently, under-reporting occurs by wide margins. Two causal factors for this under-reporting by providers have been that: (1) disclosing data may violate their patients’ privacy, and (2) disclosed data may be used to evaluate their performance. A reluctance to disclose information due to privacy concerns exists despite the U.S. Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule permitting disclosures of personal health information (PHI) for public health purposes without patient authorization. On the other hand, such patient privacy concerns are somewhat justified: there have been documented breaches of patient information from public health data custodians.

A common way to address this privacy issue is to de-identify patient data before it is disclosed to public health.

Type
Supplement
Information
Journal of Law, Medicine & Ethics , Volume 41 , Issue S1 , Spring 2013 , pp. 37 - 41
Copyright
Copyright © American Society of Law, Medicine and Ethics 2013

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