Risky Business: Sharing Health Data While Protecting Privacy

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.