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Facilitating Analytics While Protecting Individual Privacy Using Data De-identification

Khaled El Emam (Children's Hospital of Eastern Ontario - Research Institute & University of Ottawa)
Data Liquidity Salon F
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In this talk we will present two case studies where we conducted an analysis of the privacy
implications associated with sharing health data. In the case of Mount Sinai, the information is to be shared with other analysts, and with the public in the case of the State of Louisiana. We will discuss the methodology used to de-identify this health data in a defensible way according to the HIPAA standards; and produce the high utility data that can accelerate research and to provide open, de-identified data for innovation.

State of Louisiana:

It is no secret that the State of Louisiana has some of the worst health outcomes in the United States since United Health Foundation started ranking states in 1990 in its America’s Health Rankings list. Recognizing that the health of its citizens is of paramount concern, and that poor health outcomes have an adverse impact on virtually every aspect of life in the state, Louisiana has set a target to raise its health ranking to thirty-fifth within the next ten years.

One of the most important factors in being able to meet this aggressive target is the state’s decision to leverage available innovative technology solutions and analytics. An example of the State’s novel approach is its participation in the CajunCodeFest which will be focused around de-identified Medicaid claims and Immunization registries. The CajunCodeFest is the signature event for the Center for Business & Information Technologies (CBIT) at the University of Louisiana at Lafayette (UL Lafayette). The event focuses on a 27- hour coding competition that provides participants the opportunity to transform “data” into health care solutions. This year the data released will be used to create a solutions that encourage patients to “Own your Own Health” to make knowledgeable and informed decisions about their healthcare. Having access to realistic, yet de-identified data, is the only way this competition could be successful.

Mount Sinai School of Medicine Department of Preventative Medicine: The World Trade Center First Responder Registry

The World Trade Center Health Program, Clinical Center of Excellence (WTCHP) is a registry that was established to collect health and social information about more than 27,000 of the 9/11 first responders, and it has been operating for more than a decade now. This is highly sensitive and valuable information, and can be used to understand the longitudinal physical and mental health, as well as social, effects experienced by first responders on and after 9/11. The ability to rapidly analyze this data can help identify important interventions of value to these individuals.

From this talk you will:

• Understand what the HIPAA Privacy Rule de-identification standards are and how they can be
operationalized.
• Learn through case studies how data sets can be de-identified and disclosed, while retaining significant utility.
• Develop a critical understanding of the different approaches to de-identification.
• Learn about the specific risk assessment and de-identification techniques that were used on the
• first responder registry and the and the de-identification of data sets used in preparation of the CajunCodeFest coding competition.

Photo of Khaled El Emam

Khaled El Emam

Children's Hospital of Eastern Ontario - Research Institute & University of Ottawa

Dr. Khaled El Emam is an Associate Professor at the University of Ottawa, Faculty of Medicine, a senior investigator at the Children’s Hospital of Eastern Ontario Research Institute, and a Canada Research Chair in Electronic Health Information at the University of Ottawa. His main area of research is developing techniques for health data anonymization and secure disease surveillance for public health purposes. Previously Khaled was a Senior Research Officer at the National Research Council of Canada, and prior to that he was head of the Quantitative Methods Group at the Fraunhofer Institute in Kaiserslautern, Germany. He has co-founded two companies to commercialize the results of his research work. 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, and ranked second in 2002 and 2005. He holds a Ph.D. from the Department of Electrical and Electronics, King’s College, at the University of London (UK).

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