Risky Business: Sharing Health Data While Protecting Privacy

Publisher Marketing: 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. Contributor Bio:  El Emam, Khaled Khaled El Emam is currently Research Associate, Software Engineering at the National Research Council, Canada. He was previously the head of the Quantitative Methods Group at the Fraunhofer Institute for Experimental Software Engineering in Germany. Dr. El Emam is also the editor of the IEEE TCSE "Software Process Newsletter," the current International Trials Coordinator for the SPICE Trials (which is empirically evaluating the emerging ISO/IEC 15504 International Standard world-wide), and co-editor of the ISO's project to develop an international standard defining the software measurement process. Previously, he worked in both small and large software research and development projects for organizations such as Toshiba International Company, Yokogawa Electric, and Honeywell Control Systems. He obtained his Ph. D. from the Department of Electrical and Electronics Engineering, King's College, the University of London (UK) in 1994. He was previously a Research Scientist at the Centre de recherchA(c) informatique de Montreal (CRIM) in Canada.