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Do you know where your health info is?

Think of online banking. You pick up your phone or turn on your computer. You check your savings, your credit card, your mortgage, your investments. All the data is there, and access is always available, wherever you are. And it’s secure.

Your money is important. Now think of your personal health. Can you look up your entire prescription history? The results of various checkups? Try to find some information from a doctor’s appointment a few years back when you had a different doctor or lived in a different province. Maybe you also want to check your lifelong vaccination history. I kind of remember getting a tetanus shot five years ago.

For most Canadians, the above is a fantasy. You can’t look up individual health records, certainly not all in one place. Researchers struggle to get good, anonymous aggregate data on the entire population. Public-health officials likewise struggle.

Canada has long had a data deficit across all spheres of society. Canada fails to collect enough data, and fails to share it and analyze it. The problem is acute in health care. Canada’s health data is a fractured system, among provinces and institutions within provinces. Rules still revolve around a paper-based system, and there’s a culture that skews to keeping information secret, held back from you and the public.

The pandemic exposed all of this. When the virus hit, the many ingrained problems stymied public health and researchers, from incomplete basic data to gauging the effectiveness of vaccines. Disparate systems slowed or prevented full analysis. Quickly producing a detailed national picture was and is difficult.

“There is no doubt that our response to the pandemic has been severely limited as a result,” wrote Dr. Vivek Goel, chair of the Pan-Canadian Health Data Strategy Expert Advisory Group, in an initial report this past June.

Ottawa formed the expert group last year and its mandate, though borne out of the pandemic, is broader: an overhaul of how Canada works with health data. The group’s June report, titled Charting a Path toward Ambition, outlined the problems. A second report, released this week, started to zoom in on fixes. The end goal, coming this winter, will offer policy ideas to build a nationwide health data strategy.

What’s missing and badly needed is a single nexus of health data – for all individual Canadians, as well as doctors, public health and researchers. Dr. Goel proposes a cross-Canada entity with national standards overseen by Ottawa and the provinces. Such co-operation may sound fanciful, given the history of Confederation. But unless the usual acrimonies can be overcome, no real change will occur.

One case study the expert group cited was of the more than two million Canadians with diabetes. Blood sugar tests at local labs are a standard part of care. Many labs provide fast results to patients, but performance varies, and some send results to doctors by fax. Different labs also produce an array of results from one vial of blood, depending on methods and other factors.

It adds up to a real mess, wasting time and money, stifling innovation (good luck if you’re a researcher seeking useful data) and hampering care for patients. Multiply this over and over, across the entire health system.

One study released in August found that Canada ranked last out of G20 countries in sharing genomic data that allows scientists to try to better understand coronavirus variants. More broadly, the latest Commonwealth Fund ranking put Canada 10th of 11 rich countries, ahead of only the United States, in health care results compared with money invested.

Canada is falling behind, while other countries push ahead. Israel, a leader in the idea of “one person, one record,” had half its population vaccinated by mid-February and a peer-reviewed study of the results landed shortly thereafter.

There are three big issues. One is systems. The second is political. The third is philosophy. On systems and politics, the expert group looked back at reports as far as a half-century. Ideas for reform are not new. The pandemic highlighted something Canada has long known is a problem. Better systems are obviously a must. Digital, not analog. More co-operation is essential. But above all, Canada needs a sea change in how we view health data. Your personal data is a personal resource; millions of anonymous and aggregated data points are a national resource. None of it should be siloed and hidden.

EDITORIAL

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2021-12-04T08:00:00.0000000Z

2021-12-04T08:00:00.0000000Z

https://globe2go.pressreader.com/article/282802129627932

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