It’s a meeting long overdue but certain to come up short. This week the provincial, territorial and federal ministers of health are meeting to renegotiate the Health Accord, which expired in March 2014. In addition to discussing the historic federal-provincial funding model, the meetings will revisit the blueprint for digital health networks — how hospitals, doctors, clinics and other medical systems talk to one another and share information. The key element missing from the elaborate organograms they will discuss, however, is the very reason the system exists: the patient.
These days, nearly every health organization in Canada has talking points about patient engagement and empowerment. But for the most part it’s just talk. It’s time to put the e-patient into e-health planning — not just because it’s the right thing to do, but also because citizens are doing it anyway.
In the era of social media and wearable tech, the amount and quality of health information people can collect on their mobile devices is so vast — whether it’s family history, symptoms, biometric data, or food and drug intake — experts have taken to calling it “big data” or the “quantified self.” Yet, so little of it is gathered, digitized and shared that it is fair to say that Canada is in the Bronze Age of patient empowerment.
Take the simple task of a family doctor in Canada sharing a patient’s X-ray with a specialist (let alone with the actual patient). A recent Commonwealth Fund survey found that only 14 per cent of Canadian doctors reported having the ability to share test results with doctors outside their practice. That puts Canada dead last behind the 10 other developed countries surveyed. This lag cannot be attributed to a want of entrepreneurship in the sector.
The last few years have brought about several made-in-Canada digital health solutions that put patients at the helm of their own health, innovations that, until a few years ago, were in the realm of science fiction. Toronto-based GeneYouIn, for example, provides self-administered genetic tests that enable patients to have an evidence-based dialogue with their pharmacist or physician, with the aim of better personalizing their prescriptions.
In The Patient Will See You Now, cardiologist Dr. Eric Topol explores how smartphones, tablets and other bits of technology — think of Fitbit, glucose monitors, smart thermometers, etc. — are combining with big and small data to democratize self-management in health care in the same way personal computers unleashed information technology to the masses two decades ago.
In the U.S., 500,000 veterans can now simply visit a website and, with a mouse click, download their own health records from a system called the Blue Button and share it with anyone from personal trainers to care providers. According to the White House, 150 million Americans “have the promise” to use the Blue Button to access their own medical data.
In Canada, on the other hand, we continue to lag behind, with a few notable exceptions. In Ontario, for example, MaRS is currently developing a gateway to enable citizens to access and control their own electronic health data — information that has historically been accessible only to the formal health care system — and share it with their doctor, hospital, mom or app provider. MyHealth is based on the same foundation of consumer access to health data that underpins the Blue Button in the U.S., as well as other similar initiatives in the Netherlands and the United Kingdom.
Last year, the final report of the Advisory Panel on Healthcare Innovation, led by former University of Toronto president David Naylor, said “Canada’s progress in rolling out consumer health technologies to all patients has been slow,” save for some institutional initiatives such as Sunnybrook Hospital’s MyChart, McMaster University’s Personal Health Record and other advances from the provinces themselves. Naylor cited surveys suggesting that “while 80 per cent of Canadians would like access to their health information online … only four per cent of Canadians currently had such access.”
At this week’s meeting, the timing is ripe for our policy-makers to reinvent our health care system through a different lens — one that recognizes that patients are no longer mere passive recipients of health services, hoping for the best treatment option suggested by their all-knowing health providers. Canadian citizens, too, must be able to manage their health destiny to become controlling partners of their own health information. It’s already happened in the financial sector. Health is the next frontier.
– Dr. Zayna Khayat is senior adviser, Health System Innovation, at MaRS and director of MaRS EXCITE