One Patient, One Record – Dr. Khaled El Emam

Dr. Khaled El Emam is a professor at the University of Ottawa, Faculty of Medicine and School of Information Technology and Engineering and is the Canada Research Chair in Electronic Health Information.   Dr. El Emam’s presentation is entitled “What Does the Canadian Public Think About the Privacy of Their Health Information”.  Highlights of this presentation include:

  • # breaches of health data by data custodians is relatively rare but large # of records impacted
    • 174 breaches over 3 years
    • number of records impacted – 9M
  • Summary of public surveys on privacy
    • 39% of Canadian feel that health information is safe and secure (2007)
    • 56% very concerned about privacy of personal information (2009)
    • People have highest level of trust in medical institutions with regard to keeping information secure and private
  • People change behaviour in negative ways to protect privacy (patients asking physicians not to record certain information in their medical record)
  • Trust is hard to gain but easy to lose
    • Negative news about a trusted organization will have a greater impact
    • Undecided people more impacted by negative news than positive news
    • People will positive beliefs will very betrayed by a privacy breach
  • Dimensions of Concern
    • Collection
    • Control
    • Awareness Transparency
  • Control
    • Want access to their own records
    • Ability to correct records
    • Mask or hide sensitive information
    • Breach notification system in place
    • Knowing with whom their information is shared
  • Although few people may exercise privacy rights but very important to them that they exist
  • Public generally uncomfortable sharing information without control, especially with organizations with a profit-making orientation
  • Least comfort with sharing information (e.g. for research purposes)
  • Public is willing to make trade-offs – full control is particularly important


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