When personal health data is no longer “personal”

Abstract

Enacted in 2000, the Canadian Personal Health Information Protection and Electronics Documents Act is an important piece of legislation aimed at safeguarding an individual’s right to control their personal health information. Since this time, the world of data and analytics has shifted in terms of our potential to collect, integrate, and analyze both structured and unstructured data. The implications for these data advancements are endless for our healthcare system; however, challenges influenced by our approach to collecting, accessing, and analyzing data as well as patient consent to share personal health information mean public entities lag behind commercial players in harnessing these potential benefits. While there are examples of data analytics application successes, Canadian healthcare continues to lag behind other countries and commercial sectors. We are at a pivot point for system improvements requiring a collective approach to collection, storage, linkage, and application of personal healthcare data. In the chasm of this rests how we address patient consent. All health leaders can play a central role in advancing our application of data for system improvements. Strategies to support health leaders in achieving this potential are outlined in this article.