Guide to the De-Identification of Personal Health Information


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Table of Contents

The Case for De-Identifying Personal Health Information. Permitted Disclosures, Consent, and De-identification of PHI. Permitted Uses and Disclosures of Health Information. The Impact of Consent. Data Breach Notifications. Peeping and Snooping. Unplanned but Legitimate Uses and Disclosures. Public Perception and Privacy Protective Behaviors. Alternative Methods for Data Access. Understanding Disclosure Risks. Scope, Terminology, and Definitions. Frequently Asked Questions about De-identification. A Methodology for Managing Re-identification Risk. Definitions of Identifiability. Data Masking Methods. Theoretical Re-identification Attacks. Measuring Re-Identification Risk. Measuring the Probability of Re-identification. Measures of Uniqueness. Modeling the Threat. Choosing Metric Thresholds. Practical Methods for De-Identification. De-identification Methods. Practical Tips. End Matter. An Analysis of Historical Breach Notification Trends. Methods of Attack for Maximum Journalist Risk. How Many Friends Do We Have? Cell Size Precedents. The Invasion of Privacy Construct. General Information on Mitigating Controls. Assessing Motives and Capacity. Invasion of Privacy.

About the Author

Dr. El Emam holds the Canada Research Chair in Electronic Health Information at the University of Ottawa and is an Associate Professor in the Faculty of Medicine at the university. In 2003 and 2004, he was ranked as the top systems and software engineering scholar worldwide by The Journal of Systems and Software based on his research on measurement and quality evaluation and improvement. He is a senior scientist at the Children's Hospital of Eastern Ontario Research Institute and leads the multi-disciplinary Electronic Health Information Laboratory (EHIL) team. Dr. El Emam is one of only a handful of individuals worldwide known to be qualified to de-identify personal health information for secondary use under the HIPAA Privacy Rule Statistical Standard. Khaled is also a world-renowned expert in health information privacy and the head of the Electronic Health Information Laboratory which conducts cutting edge research in this area. He has been de-identifying data since 2004, and has a large following and speaks extensively on this topic. He has edited 2 books and written one already, as well as contributed chapters to a number of others.


By arguing persuasively for the use of de-identification as a privacy-enhancing tool, and setting out a practical methodology for the use of de-identification techniques and re-identification risk measurement tools, this book provides a valuable and much needed resource for all data custodians who use or disclose personal health information for secondary purposes. Doubly enabling, privacy-enhancing tools like these, that embrace privacy by design, will ensure the continued availability of personal health information for valuable secondary purposes that benefit us all.
-Dr. Ann Cavoukian, Information and Privacy Commissioner, Ontario, Canada

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