During the Partnership Conference held in Calgary this year, there was a stand out Leadership Panel on subject, entitled: The Big Questions: Data Governance, Privacy and CyberSecurity in Health IT. The panel was moderated by Abigail Carter-Langford, ED Health Information Governance and CPO for Canada Health Infoway. Panelists included:
- Jill Clayton, Information and Privacy Commissioner, Alberta OIPC
- Deborah Prowse, Alberta’s Health Advocate
- Kevin Magee, Microsoft Canada
- Eric Sutherland, Director IM for MOHLTC, Ontario
The panelists represented diversity of both geography and expert perspectives, the discussion focused on:
"Data currently ranks among the most valuable assets globally. To that end, there is no question that various levels of government as well as health care providers are uniquely challenged to protect the privacy of Canadians. This protection includes ensuring personal health information is stored, accessed, managed and shared safely for the right purpose, by the right person at the right time.”
During the Q&A, there was frustration expressed by several members of the Partnership audience on the importance of accelerated action for realizing patient data sharing on national level, “Let’s get on with it”, they said. As recently as 2016, there have been observations made that Canadians are very good at making significant plans; however, the execution is either incomplete or left out.
It may appear that we are turning the corner on execution. Three positive action steps currently being taken will result in progress across all of Canada for sharing of patient data. These include one that was published earlier this year by the Health Information Privacy Group (HIPG), an announcement by Michael Green (CEO of Canada Health Infoway) during the Partnership Conference, and the sharing of U.S. experience by Mariann Yeager of the Sequoia Project.
- In May of 2017, Infoway's Health Information Privacy Group (HIPG) published a document on Common Understandings for Privacy Impact Assessments across Canada.
A Privacy Impact Assessment (PIA) is a formal risk management tool that includes consideration of other risk management documents to assist in identifying potential privacy risks. The core principles of the PIA Common Understandings can be applied to any project or activity across a jurisdiction with impacts on the privacy of an individual."
- Michael Green, CEO for Canada Health Infoway, announced the intention of Infoway to pursue a national program, in parallel to PrescribeIT. MyHealth Gateway, will enable an individual to access ALL of his/her health information, anywhere across Canada. Michael emphasized MyHealth Gateway will leverage and expand on existing jurisdictional patient-facing initiatives e.g. patient portals and personal health record platforms.
- Highlighting valuable lessons learned in sharing health data and information by our colleagues to the south, Mariann Yeager was the closing keynote speaker for the Partnership Conference. Mariann is the CEO for The Sequoia Project. Sequoia Project is a leading interoperability organization in the United States. Two U.S. initiatives supported by The Sequoia Project:
- The eHealth Exchange is a rapidly growing community of exchange partners who share information under a common trust framework and a common set of rules.
- Carequality is a public-private collaborative building consensus among health IT data exchange programs to develop a common interoperability framework enabling seamless exchange among networks.
Canadians have demonstrated their willingness to share personal information, including sometimes very sensitive information, when they perceive value is returned. Social media has shown that the pubic is generally willing to display information not just with friends and family, but for global consumption. An example in practice today: Patients Like Me web portal has reached 500,000 individuals who have volunteered their data related to specific diseases, illnesses, response to medications. If you wonder if there is real value to patient contributed data, note that Walgreens Corporation and their 14,000 pharmacy outlets across the U.S. has included references to useful anecdotal information from Patients Like Me on responses to drug interaction.
Big thank you note for Canada Health Infoway in bringing knowledge experts, as well as representative patient advocates, together in Calgary during Digital Health Week, to not only highlight the need for shared patient data, but more importantly, to focus on some obvious solutions and options for Canada.
In closing, it is not difficult to envision a Canadian future where MyHealth Gateway’s portal is a reality. With forethought, there are two direct consequences that really accelerate patient data and information sharing across Canada:
- Canadians will have not just direct access but also direct management of their online digital information, both their clinical information and their personal health information.
- Canadians are encouraged to freely share selected data subsets of their own patient identified data and their clinical information for use in research, in
clinical practice, in public policy development.
Susan Anderson is the Managing Director for the Canadian Business at Orion Health. Susan is an accomplished e-health strategist with more than 20 years’ experience in healthcare informatics. Most recently, she was the Assistant Deputy Minister and CIO for the Health Information Technology and Systems Division at Alberta Health, where she played a pivotal role in transforming Alberta’s healthcare system into one of the most digitally connected in North America. .