Managing privacy risks when building a learning health system

Last modified by Ann Watkins on 2016/04/07 16:44


Sharing and integrating health data is a necessary component of a learning health system. However, these raise considerable privacy issues that need to be addressed. The principles of Privacy by Design provide a framework for developing data governance practices. The framework can be coupled with risk-based approaches to data anonymization that can protect the identity of the patients, but still allow useful data to be shared and analyzed. In this presentation we will discuss relevant data governance and de-identification practices, and how they can be operationalized to facilitate a learning organization that uses data.


Privacy Considerations in Learning Health Systems - Introduction - Dr. Khaled El Emam

Identifying Privacy Risks Pro-actively, by Design - Dr. Ann Cavoukian

Privacy Consideration in Learning Health Systems - De-Identification Methods - Dr. Khaled El Emam


anncavoukian.jpgDr. Ann Cavoukian

Dr. Ann Cavoukian is recognized as one of the world’s leading privacy experts. She is presently the Executive Director of the Privacy and Big Data Institute at Ryerson University. Appointed as the Information and Privacy Commissioner of Ontario, Canada in 1997, Dr. Cavoukian served an unprecedented three terms as Commissioner. There she created Privacy by Design, a framework that seeks to proactively embed privacy into the design specifications of information technologies, networked infrastructure and business practices, thereby achieving the strongest protection possible. In October 2010, regulators at the International Conference of Data Protection Authorities and Privacy Commissioners unanimously passed a Resolution recognizing Privacy by Design as an essential component of fundamental privacy protection. Since then, PbD has been translated into 37 languages. 

Dr. Cavoukian’s expertise has been recognized in many ways. She was: ranked among the top 25 Women of Influence, recognizing her contribution to the Canadian and global economy; named one of the top 100 City Innovators Worldwide by UBM Future Cities for her passionate advocacy of Privacy by Design; chosen as one of the ‘Power 50’ by Canadian Business magazine for her tireless efforts as a privacy champion; awarded an Honorary Doctor of Laws from the Unviersity of Guelph; she was selected for Maclean’s Magazine’s ‘Power List’ of the top 50 Canadians, and most recently, picked as one of the top 10 women in data security, compliance, and privacy you should follow on Twitter. 

In her leadership of the Privacy and Big Data Institute at Ryerson University Dr. Cavoukian is dedicated to demonstrating that Privacy can and must be included, side by side, with other functionalities such as security and business interests. Her mantra of “banish zero-sum” enables multiple interests to be served simultaneously – not one to the exclusion of the others. 

khaledelemam.jpgDr. Khaled El Emam

Dr. El Emam is a senior scientist at the Children’s Hospital of Eastern Ontario (CHEO) Research Institute and Director of the multi-disciplinary Electronic Health Information Laboratory (EHIL) team, conducting academic research on de-identification and re-identification risk. Khaled also held the Canada Research Chair in Electronic Health Information at the University of Ottawa from 2005 – 2015, and is an Associate Professor in the Faculty of Medicine and the School of Electrical Engineering and Computer Science. He was also one of the first Privacy by Design Ambassadors recognized by the Ontario Information and Privacy Commissioner.

Dr. El Emam is the founder and CEO of Privacy Analytics Inc. As an entrepreneur, he has helped found five companies involved with data management and data analytics. He has worked in technical and management positions in academic and business settings in England, Scotland and Japan.

In 2003 and 2004, Dr. El Emam 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.

Previously, Dr. El Emam was a Senior Research Officer at the National Research Council of Canada. He also served as the head of the Quantitative Methods Group at the Fraunhofer Institute in Kaiserslautern, Germany. He has a PhD from the Department of Electrical and Electronics Engineering, King’s College, at the University of London, England.

Created by Ann Watkins on 2015/06/23 19:24