Anonymous Information

Protecting patient privacy

Medical research often relies on the data that's available in your patient history. With the increasing use of electronic health records, there's more information available to researchers than ever before. At the same time, patients' privacy concerns have never been higher.

Making more health information available to researchers and medical practitioners would lead to greater advancements in the search for treatments or cures for diseases such as cancer, Alzheimer's disease or diabetes.

Khaled El Emam, a leader in privacy research and the Canada Research Chair in Electronic Health Information, is helping researchers get the information they need, while ensuring patients the privacy they deserve.

"We need to continuously evaluate these risks to privacy, and put in place measures to protect anonymity. Failure to do so will result in a public unwilling for their health data to be used for secondary purposes, such as health research," says Dr. El Emam.

Dr. El Emam has developed software—called Privacy Analytics Risk Assessment Tools—that can process data and highlight how people could be identified by their information. Steps can then be taken to modify the information included in the study to protect anonymity.

It's a process that involves more than removing names and addresses. He points out that Canadians can be uniquely identified from their date of birth, postal code and gender. "If only a three-character postal code is combined with the full date of birth, close to 80 percent of the population is unique—or easily identifiable. I suspect this will surprise most people," says Dr. El Emam.

He has commercialized the technology, creating a spin-off company called Privacy Analytics that employs 12 people. The company provides services to pharmaceutical companies conducting clinical tests and is exploring non-medical applications to boost global growth for the company.