IN 1983, after two years of living with unexplained symptoms, I was diagnosed with rheumatoid arthritis. My previous health care experience was limited to an annual visit to my family doctor to refill a birth control prescription. Like most Canadians, I thought my care providers had all the answers in a well-functioning care system that would meet my needs.
Unfortunately, I learned the hard way – like many Canadians with complex chronic conditions – that much of the coordination of care and management of my medical information would fall on my shoulders.
The first hint of the problems I was going to face began when we moved from province to province, from British Columbia to Ontario to New Brunswick, with a baby and a toddler. small, and found out we didn’t have health insurance when establishing residency. My health data was not following me either.
Luckily, my arthritis was in remission until my daughter was born in 1987, and I was lucky enough to find a family doctor and a specialist. Then the cycle through various treatments began, none of which were very effective until 1999 when I had access to a biologic drug. It was during this long process that I realized how failing our healthcare system was.
I needed access to a new treatment that was approved in the United States in 1998, but which almost two years later was still not available in Canada, while I looked at the few joints not yet affected by the disease deteriorates slowly and contributes to irreversible disability.
I became responsible for keeping my health information flowing, responsible for educating healthcare providers about rheumatoid arthritis and my needs, even though few listened to me. Having to explain to an ER doctor that because I’m on biologics I need an antibiotic for upper respiratory tract infections, that’s the norm because even though I show my health card and my information is entered in a computer, they don’t have access to my health information.
I was so hopeful that with the advent of an electronic health record, some of the burden of health data management would be taken off my shoulders. It is enough to live with an incurable and debilitating disease, but being responsible for ensuring the flow of information often makes life overwhelming.
It’s now 2022, and I still don’t have access to my recorded medical information and medical history, and neither do most of my practitioners. My health data remains scattered across the computerized systems of different health silos, specialists, institutions and provinces. This means that my health care providers often work in the dark.
The last two years have reinforced the importance for individuals themselves to have transparent access to their health data.
Immunocompromised patients have received so much conflicting information about COVID-19 vaccination, with eligibility differing from region to region; we had to get letters from our doctors confirming our status and take them to vaccination clinics where we were often challenged about our eligibility. As high-risk patients, we are supposed to be a priority for new COVID-19 treatments that lessen the severity of the disease, but few of us know how to access them.
In an age of “self-management”, patients are expected to play an even greater role in managing their care, but if we are not given the tools we need, it is a question impossible.
The Expert Advisory Group on the Pan-Canadian Health Data Strategy (PCDS) recently released the third report in a series outlining the fundamental changes needed to deliver the health care system Canadians deserve. The report calls for a “learning health system” in which data-driven information leads to evidence-based decision-making in all health programs, services, surveillance and care delivery.
At the heart of this idea is the call for a “person-centric” data system, where all healthcare providers – and the patient – have quick access to an individual’s organized health data. around the individual. The data would not be siled by facility or provider, but would follow the patient. This would eliminate issues that Canadians often face today, such as duplicate services, missed diagnoses and substandard care.
It is time for this to happen.
We must finally enable high-quality, ever-improving health care through accurate, accessible, and meaningful health information.
Linda Wilhelm is President of the Canadian Arthritis Patient Alliance.