Risky Business: Sharing Health Data while Protecting Privacy

by Editor Khaled El Emam



Book Details

Language : English
Publication Date : 3/4/2013

Format : Softcover
Dimensions : 6x9
Page Count : 252
ISBN : 9781466980501
Format : Hardcover
Dimensions : 6x9
Page Count : 252
ISBN : 9781466980518

About the Book

Due to the digitization of medical records,  more and more health data is readily available. This dynamic has created many opportunities to unlock this information and use it to improve medical practice, and through research and surveillance understand the effectiveness and side effects of drugs and medical devices to ultimately improve the public’s health.  This data can also be used for commercial purposes such as sales and marketing.   However, this newfound utility raises some profound questions about how this data ought to be used and how it will impact personal privacy. Unless we are able to address these privacy issues in a convincing and defensible way, there will be increased breaches of personal privacy. This will provoke regulators to impose new rules limiting the use and disclosure of health data for secondary purposes, patients increasingly to adopt privacy protective behaviours because they no longer trust how their health information is being managed, or healthcare providers to be reluctant to share their patients’ data.

By adopting responsible data sharing practices, researchers, companies and the general public can gain the benefits and the promise of big data analytics without sacrificing personal privacy or infringing upon law or regulation. Risky Business – Sharing Health Data While Protecting Privacy illustrates how this goal can be achieved.   Bringing articles from a diverse collection of health data experts to inform the reader on contemporary  policy, legal and technical issues surrounding health information privacy and data sharing. It is a uniquely practical work to inform the reader on how best – and how not to – share health data in the US and Canada.

About the Author

Khaled El Emam

Dr. Khaled El Emam is the Founder and CEO of Privacy Analytics, Inc. He is also 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 de-identification or anonymization and secure disease surveillance for public health purposes. He has made many contributions to the health privacy area. In addition, he has considerable experience de-identifying personal health information under the HIPAA Privacy Rule Statistical Standard.

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 PhD from the Department of Electrical and Electronics Engineering, King's College, at the University of London (UK). His websites are www.ehealthinformation.ca and www.privacyanalytics.ca