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Q & A with Khaled El Emam

What is your research focused on?
My research focus is on methods to protect patient privacy while also making their health information available for research, surveillance and other important purposes beyond direct care. These methods include de-identification (removing directly and indirectly identifying information) and secure computation (linking and analyzing encrypted data).

Why is this important?
This research is important because it allows us to use health information to improve the quality of patient care, make new research discoveries, and track the spread of diseases without exposing information about patients’ identities. This is particularly important when dealing with sensitive health information such as HIV status, mental health records, and other potentially stigmatizing information.

What discoveries have you made?
We have identified several methods in which personal health information was being shared without patients’ knowledge. Some examples include information found on second hand computer disk drives and information shared via peer-to-peer file sharing networks. We have researched the concerns of both patients and their health care providers about health information privacy, and have found that these concerns can act as a barrier to the sharing of health information. In addition to our more technical work of measuring and modeling re-identification risk for existing health data sets, such as hospital prescription records data, developing de-identification methods that aim to protect patient privacy while providing high quality data that is useful for research and other secondary purposes, and developing secure surveillance protocols that can be used for anonymous reporting to public health authorities.

What impact has your research had?
The results of our research have informed revisions to North American laws and regulations dealing with the protection of personal information, and have been used as the basis for best practice guidelines for health information de-identification and data sharing in multiple jurisdictions. The results of our work have been used extensively in practice by Research Ethics Boards, health data registries, government agencies, pharmaceutical companies, medical device companies, health IT companies, and Canadian and US government departments.

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