When you see different doctors, is anyone keeping track of your health? Often no, new report says

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When you see a specialist or get test results, it might be tempting to think that, somewhere, a medical professional is connecting the dots.

But a new report by an Alberta group found that sharing health information between professionals is often fragmented in Canada — increasing the likelihood of medical errors and harm, the report suggests.

"In most places in Canada, health information does not flow digitally from one clinic or hospital or health authority to another," said Dr. Ewan Affleck, the report's lead author and a family doctor who works in Edmonton and Northwest Territories.

"It just simply stops."

This means that when a patient is referred to an orthopedic surgeon by their family doctor, for example, the specialist may not have access to prior X-rays or a record of the patient's worsening knee pain.

Something similar happened to mechanical engineer Greg Price, who at just 31 died in 2012 following complications of testicular cancer surgery — a procedure that was delayed because his medical information wasn't shared efficiently.

Affleck called Price's case — the subject of a 2013 report and 2018 short film — a documented death ascribed in part to health information mismanagement. But the problem happens far more frequently than realized and it hasn't been studied or measured properly, he said.

"If we do not design and use health data properly this can lead to harm to people, communities and the health-care system," including illness and death as well as inefficiencies and health provider burnout, he said.

The report, Data disarray, published by the Alberta Virtual Care Coordinating Body, calls for a reimagining of governance and public policy for health data in Canada to catch up to countries like Denmark and the U.S., where legislation to promote coherent use of health data came in decades ago.

Price, a pilot, engineer, baseball player and uncle, had seen a doctor for a routine physical, had lab tests, been to a walk-in clinic with two different physicians, and was waiting to see a general surgeon before — more than a year after the first appointment — the cancer was found and he was sent for urgent surgery.

If two pieces of information — back pain and thickening of the epididymis, a duct connected to the testicle — had been accessible to Price's health-care team, his case most likely would have been identified as potential testicular cancer before it spread, his sister Teri Price said, based on reports into the death. 

But since these facts were kept in separate silos at different clinics, the connection wasn't made until significantly later than it could've been, said Price, a patient safety advocate in Calgary and executive director of Greg's Wings project, a non-profit in her brother's honour.

"It can be frustrating when you have to constantly repeat yourself and when you think that the doctors should be looking at the information that you just shared with somebody else," said Price.