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Why your doctor’s data problem could kill you

Look down at your wrist. Chances are you have a shiny fitness-tracker strapped there. It collects all sorts of information: physical activity, sleep, even how efficiently you use oxygen.

It would probably make sense to hand all that data to your family physician (who's constantly nagging you to get more exercise). But if you were to take it to your doc in any form other than on paper, you'd likely be met with a blank stare.

To put it simply, the health care system has a problem with data, one that goes far beyond the information stored on a Fitbit. Despite the fact that we live in the digital era, the switch to a digitized health system has not only been tortuously slow, but also ham-fisted. Even now, a patient arriving at the hospital likely won't have vital information like drug allergies or long-term diseases follow them.

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Most physicians now have an electronic health record for each patient. These systems track basics like medical conditions, medications, test history, travel and more. Each of these different aspects of a patient's medical history, however, operates on its own. In Ontario, imaging results run through a system called DI-r, while labs go through OLIS. Information can be transferred individually, but the systems aren't interoperable. Part of the problem is that, in order to get the scandal-plagued eHealth up and running quickly, each chunk of the system was farmed out to a separate private-sector developer, with no overarching plan for how to move data between areas and practitioners. The net effect: When your doctor receives a report from a specialist, it's not seamlessly shared and logged in to a single, digitized health record. And the flow of data is largely one-way only—to the family doctor.

That means that if a patient shows up unconscious in the ER, vital information can be missed because it resides at the doctor's office. The lack of data also hampers specialist diagnoses, because patients can't always know or remember which symptoms are relevant.

It's true that a single, digitized health record comes with privacy concerns. But given the serious consequences of inefficient and siloed records, the benefits outweigh the risks. Now, attempts are being made to correct the mistakes. Initiatives like ConnectingGTA are attempting to centralize and streamline health records by region. Hospitals including Toronto's Sunnybrook have had success with MyChart, a program that collects all of a patient's history and makes it accessible to both patients and doctors.

There's a lesson here for any organization rolling out a large-scale digitization project: Data is far less useful if it can't be easily (and safely) moved around. In designing any multipart digital system, there must always be a macro view of how that data might be used both now and in the future. Whether it's a rewards program, a consumer finance app, insurance data or any other type of information, data in the 21st century must be treated as a digital resource—a kind of raw material that can be analyzed, shared, reconfigured and put to different uses.

There are, in this regard, steps in the right direction. Ontario is now searching for a digital officer to lead the government's digitization push, with a mandate to increase efficiency and transparency, and ideally to improve responsiveness by collecting data that can be accessed when and where it is needed. It's a move that any large organization would do well to model—to think about digital data as an integrated system.

As for the other option, you have only to look to much of Canada's current health care system: databases jammed with vital medical information that can't be passed on precisely when it's needed most.

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