Guide to the De-Identification of Personal Health Information

"Foreword Personal health information comprises the most sensitive and intimate details of one's life, such as those relating to one's physical or mental health, and the health history of one's family. Intuitively, we understand the importance of protecting health information in order to ensure the confidentiality of such personal data and the privacy of the individual to whom it relates. Personal health information must also be accurate, complete, and accessible to health care practitioners in order to provide individuals with necessary health care. At a broader level, for secondary uses that go beyond the treatment of the individual, health-related data are needed for the benefit of society as a whole. These vitally important secondary uses include activities to improve the quality of care, health research, and the management of publicly funded health care systems. As the information and privacy commissioner of Ontario, Canada, my role includes the oversight of health privacy legislation governing the collection, use, and disclosure of personal health information by organizations and individuals involved in the delivery of health care services. Ontario's Personal Health Information Protection Act (PHIPA) aims to respect an individual's right to privacyin relationship to his or her own personal health information while accommodating the legitimate need to access health information for well-defined purposes. PHIPA does this in part by establishing clear rules for the use and disclosure of personal health information for secondary purposes. The object of these rules is to maximize the benefits of both respecting personal privacy and making health information accessible for purposes that serve society as a whole"--

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 www.ehealthinformation.ca 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.