Greg Price died of complications after testicular cancer surgery, but a review of his case found that missed faxes, follow-ups and faulty data sharing ultimately cost the vibrant 31-year-old Alberta man his life years.
All the mistakes in his case meant it took 407 days from his first complaint for Price – an engineer, pilot and athlete – to be diagnosed with cancer. She died three months after her doctor told her she needed to see a specialist, and as she bounced between doctors, her health records often weren’t.
Now, his sister, Teri Price, says little has changed in the sharing of medical information in the decade since her brother’s death. This, despite a review of her case, the 2013 Alberta Continuity of Patient Care Study, recommended life-saving changes to the health care system to prevent more experiences like hers.
So he’s fighting to improve the system he says not only failed his brother, but remains unchanged.
“He was never afraid to back down from a challenge,” Price said.
Price says Canadians assume their health information is shared between doctors to keep them safe and studied to improve the system, but it often isn’t. And frontline medical staff in Canada say problems persist when it comes to sharing everything from patient information to aggregate medical and staffing data.
“Information tends to be split between the services that patients attend,” said Ewan Affleck, a doctor in the Northwest Territories who has spent his career fighting for better access to data and a member of the group d ‘advice from Pan-Canadian Health experts. Data Strategy Group.
“Cohesion and use of health data in Canada is set to fail.”
Greg Price was 31 when he died after falling through the cracks of Alberta’s health care system. (Family price)
Canada historically poor at data sharing
Healthcare data sharing issues go beyond individual patient care. And experts have long advocated better sharing of health data between countries.
Canada does not have a national database for its more than 100 health authorities and regions to compare human resources and health data. This includes everything from waiting times to understaffing.
Last May, the dire need for better health data sharing was outlined in a report, called the Pan-Canadian Health Data Strategy, which noted that if a stronger health database were to be established, “ the health inequalities experienced during the pandemic would be”. have been reduced and lives would have been saved.”
A recent effort to link increased federal health care funding to the creation of a national health database to provide better fiscal accountability failed last week after talks between federal health ministers, Canada’s provincial and territorial governments collapsed.
Canadian Health Minister Jean-Yves Duclos had said he was willing to increase health care funding by an unspecified amount if provinces agreed to a “significant expansion in the sharing and use of indicators common health key and to build a world-class health data system.” for Canada.”
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But the Vancouver meeting ended without a resolution after Canada’s prime ministers issued a statement saying “no progress had been made” and Duclos left.
The federal Ministry of Health declined an interview request from CBC News, but a spokesperson wrote in an email: “Improving the ability to collect, access and share timely and comparable data will save lives.”
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Better data could help with staff shortages
The Canadian Nurses Association, which is pushing patient ratio standards, would agree to a national health database. It’s difficult to even measure the overall nursing shortage without national data, according to the BC nurses union.
“There’s no real current data that tells us exactly how much we’ve actually lost. Like we said, we need 25,000 to 30,000 nurses. We may need a lot more than that,” the emergency room veteran said. nurse Peggy Holton of the BC Nurses Union.
Holton works in one of the largest emergency departments in North America, which he says sees 500 to 600 patients a day.
Holton says nurses suffer too much “moral and mental despair” as a result of understaffing, especially during crises such as the heat dome event, when they were so short-staffed that they were forced to avoid patients who needed pain care or toileting. to manage multiple resuscitations.
Holton said she has seen many new nurses drop out because of stress.
“I find them in a corner somewhere, just crouching down, saying, ‘I can’t do this anymore, I can’t do this.'”
She said many Canadian hospitals are forced to use more expensive contract nurses, which cost millions of extra dollars each year, data she said should be analyzed and used to solve the staffing crisis.
“When you don’t have staff you don’t have a system. And systems are failing,” Holton said.
Fragmented information
In Canada, health care funding is the responsibility of the provinces and territories, which oversee health authorities. Each of these authorities collects its own statistics and data in its own way, on various platforms, and not all of them share the same data in the same way.
Although average emergency wait times, staffing and patient deaths are counted, these numbers can be difficult to find or access.
That’s a problem, said Affleck of the Pan-Canadian Health Data Strategy Group. He says running a healthcare system with limited data is like flying a plane with hidden instruments.
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“It’s a crisis. It’s not good to fly blind,” said the doctor, who said he has seen patients die because key information is missing.
“The information we need is missing or hard to access. It puts people at risk.”
Affleck learned firsthand the challenges of providing safe, quality medical care with missing information. One of his first patients was a baby who fell on a cement step. He remembers struggling to interpret a muddy radiograph with little experience and no radiological support.
The baby survived, but the experience inspired Affleck to spend decades trying to help develop virtual tools to help serve remote northern communities and save lives.
It developed a single digital patient record system that allowed information to be shared between 32 communities.
Fort Providence became the first fully digital nursing station in Canada. Remote nurse stations in the Northwest Territories now use a single chart, except for Lutsel’ke, due to internet issues.
“If we don’t have information, the likelihood of us making a mistake increases,” Affleck said.
Price was an active man who enjoyed flying airplanes, playing sports and spending time on the farm. (Family Price)
Although the Canadian Institute for Health Information (CIHI) collects and shares health data, the institute says it has been working with governments and health authorities to improve access to comparable data across the country.
But Affleck says the data is often fragmented or incomplete.
“We’re trying to practice digital health with analog governance and politics, and it’s not working. It’s hurting us all,” he said.
Teri Price, Greg’s sister, agrees. That’s why he continues to push for better data sharing so no one else loses a loved one through cracks in the system.
“Why wouldn’t you want to be able to do a little bit of that apples-to-apples comparison and learn?”