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. He died three months after his doctor told him he needed to see a specialist, and while he went through many doctors, his health records often weren’t. Now, his sister, Teri Price, says very little has changed in the sharing of medical information in the decade since her brother’s death. This, despite a review of his case — the 2013 Alberta Continuity of Care Study — recommending life-saving changes to the health care system to prevent more experiences like his. So she fights to improve the system that she says not only failed her brother, but continues to fail to change. “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 often it’s not. And front-line medical staff in Canada say problems persist when it comes to sharing everything from patient information to aggregated medical and staff data. “Information tends to be fragmented between the services that patients see,” said Ewan Affleck, a doctor in the Northwest Territories who has spent his career fighting for better access to data and a member of PanCanadian Health’s expert advisory panel. Data Strategy Group. “Health Data Consistency and Use in Canada Legislated to Fail”. Greg Price was 31 when he died after falling prey to Alberta’s health care system. (Family Price)
Canada has historically been poor at data sharing
Healthcare data sharing problems extend beyond individual patient care. And experts have long advocated better sharing of health data between countries. Canada does not have a national database of more than 100 health authorities and territories to compare human resources and health data. This includes everything from waiting times to staff shortages. Last May, the dire need for better health data sharing was outlined in a report by the Canadian College of Health Information Management. The report, called the Pan-Canadian Health Data Strategy, noted that if a stronger health database were in place, “the health disparities observed during the pandemic would have been reduced and lives saved.” A recent effort to link increased federal health care funding to the creation of a national health database to provide better greater fiscal accountability failed last week after talks between Canada’s federal, provincial and territorial health ministers collapsed. Canadian Health Minister Jean-Yves Duclos had said he was prepared to increase health care funding by an unspecified amount if the provinces agreed to a “substantial expansion in the sharing and use of common core health indicators and the creation of a health data system world class. for Canada”. Stephanie Stanton, a respiratory therapist, pushes a ventilator in the intensive care unit at Royal Columbia Hospital on March 31, 2022. (Ben Nelms/CBC) But the meeting in Vancouver ended without a resolution after Canada’s prime ministers issued a statement saying “no progress” had been made and Duclos walked out. The federal health department 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.” WATCHES | What happens now that federal-provincial talks on health care funding have failed?
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Better data could help staff shortages
A national health database would be welcomed by the Canadian Nurses Association, which is pushing for patient ratio standards. It’s difficult to even measure overall nursing shortages without national data, according to the BC nurses union. “There’s really no current data out there that tells us exactly how much we’ve actually lost. As we’ve said, we need 25 to 30,000 nurses. We may need a lot more than that,” said the veteran ER. nurse Peggy Holton, of the BC Nurses Union; Holton works in one of the largest emergency departments in North America, where she says she sees 500 to 600 patients a day. Holton says nurses endure too much “moral and mental distress” as a result of understaffing, especially during crises – such as the heat dome event – when they were so short-staffed they had to turn away patients in need of pain care or the toilet to handle multiple resuscitations. Holton said she has seen many new nurses quit because of stress. “I find them in a corner somewhere, just hunched over, saying, ‘I can’t take it anymore, I can’t do this.’ He said many Canadian hospitals are being forced to use more expensive contract nurses, costing millions of dollars more each year – data he says should be analyzed and used to solve the staffing crisis. “When you don’t have staff you don’t have a system. And systems fail,” 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 different platforms, and they do not all share the same data in the same format. While averages for emergency wait times, staffing and patient deaths are tallied, these figures 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 an airplane with hidden instruments. WATCHES | Inside a virus-ridden children’s hospital:
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CBC News has rare access inside Toronto’s Hospital for Sick Children as staff try to keep up with the increase in seriously ill children with respiratory illnesses. “It’s a crisis. It’s not good to jump in blindly,” said the doctor, who said he has seen patients die because basic information is missing. “The information we require is missing or difficult 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 an infant who fell on a concrete step. He remembers struggling to interpret a muddy X-ray with little experience and no radiological support. The infant survived, but the experience inspired Affleck to spend decades trying to help develop virtual tools to help serve remote northern communities — and save lives. Developed a unified digital patient charting system that enabled information sharing across 32 communities. Fort Providence became the first fully digital nursing station in Canada. Now remote nursing stations in the Northwest Territories are using a single chart, except for Lutsel’ke, due to internet issues. “If we don’t have information, the potential for us to be wrong increases,” Affleck said. Price was an active man who enjoyed flying, playing sports and spending time on the farm. (Family Price) While the Canadian Institute for Health Information (CIHI) collects and shares health data, the institute says it is 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 do digital health with proportional governance and policy, 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 some of that apples-to-apples comparison and find out?”
