There’s a war for your data and health care is next

By Abigail Carter-Langford, executive director of health information governance & chief privacy officer at Canada Health Infoway

As consumers, we are constantly being encouraged to reveal all manner of data and detail about ourselves. When the Cambridge Analytica Facebook data scandal exploded onto the news headlines, it put into question what we as consumers are willingly, and likely unknowingly, sharing about ourselves and how that same data may be used to the advantage of others. In fact, it has become abundantly clear that our personal information has become a valuable commodity.

Our everyday activities, from carrying a mobile device, to using a rewards or loyalty card, filling out a social survey, or visiting websites contributes to an ever-growing digital footprint that includes details about who we are, where we live, where we go in a day, what our interests are and even what we like to eat.

Based on the current influx of technology in the health care sector, digital footprints will inevitably include more information about your personal health. Information in the wrong hands can undermine your personal safety, financial well-being, or even your mental health. It’s easy to understand the impact if your financial information is misused, but what happens when that information is your personal health care data? What happens when what you buy is correlated to your medication history, or to a recent hospital visit?

Consider a recent patent filing for a home-based hands-free speaker that would allow it to detect your coughing, and then conveniently offer you advertising for cold and flu products. Under current legislation, this is a legal use of our data and information yet the question to ask is: is it appropriate for health information to be used for commercial gain and profit?

Personal health care data that is properly collected serve legitimate and important purposes. The information accumulated by your doctors, pharmacists and hospitals is stored in digital health systems and can provide a basis for decisions about your care, authorize payment for those services and, in its de-identified form, help inform greater policy decisions for the health care system.

In Canada, the safety and protection of personal health information is highly regulated and enforced at the federal and provincial level. The health care providers and organizations who collect your information are subject to health information privacy or e-health laws in the jurisdictions in which they provide services. These laws require personal health information to be protected with proper security. They also require procedures, policies and training programs to be in place for those using digital health systems.

The challenge of course is the law that exists today does not factor in the evolution of the technology landscape since 2004. The net result is there is little recourse for consumers if personal health information is used for commercial purposes.

Questions to Ask

  • How will my health information be used?
  • With whom will you share my health information?
  • Will my information be sold?
  • Will my health information be used to sell me products and services?
  • How secure is my health information?

A recent survey conducted by Canada Health Infoway revealed that 76 per cent of Canadians believe that it is most important that privacy laws protect personal health information. For this to be a reality, we need better protection of our most personal information and we as consumers need to be asking better questions. We need to be actively involved in understanding how our personal health information is collected, managed and shared. If we aren’t, there is a risk that information about our health will be used in ways we wouldn’t expect, or want.

Luckily, there are many players who are committed to securing personal health care data. Canada Health Infoway is committed to upholding the highest standard of protection for personal health care data. One of the ways the organization does this is through PrescribeIT, an e-prescription service built to eliminate the need for paper prescriptions and safeguard patient health data from commercial use, and is available to health care professionals across the country.

Digital health is here. Canadians must appreciate the full value of personal health care data and demand better from all of us. In the digital age, protecting your most private information and safeguarding it from misuse must be the priority. And it must be done now.

Abigail Carter-Langford is the Executive Director of Health Information Governance & Chief Privacy Officer at Canada Health Infoway.

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