In 1983, after two years of living with unexplained symptoms, I received a diagnosis of rheumatoid arthritis. My prior experience with healthcare was limited to an annual visit to my family doctor to renew a prescription for birth control. Like most Canadians, I thought my care providers had all the answers within a well functioning system of care that would meet my needs.
Unfortunately, I learned the hard way – like many Canadians with complex chronic conditions — that much of the care coordination and management of my health information would fall on my shoulders.
The first hint of the problems I would face began when we moved between provinces, from British Columbia to Ontario to New Brunswick with an infant and a toddler, and discovered we had no medicare while establishing residency. My health data also did not follow me.
Fortunately, my arthritis was in remission until my daughter was born in 1987, and I was lucky to find a family doctor and a specialist. Then the cycling through various treatments began, none of which were very effective until 1999, when I gained access to a biologic. It was through this long process that I realized just how badly our health system is broken.
I needed access to a new treatment that was approved in America in 1998 but, nearly two years later, still had not become available in Canada, while I watched the few joints not yet affected by the disease slowly degrade and contribute to irreversible disability.
I became responsible for ensuring the flow of my health information, tasked with educating healthcare providers on rheumatoid arthritis and my needs, although few would listen to me. Having to explain to an emergency room doctor that, because I’m on a biologic I require an antibiotic for upper respiratory infections, is the norm because, even though I show my health card and my information is entered into a computer, they have no access to my health information.
I had such hope with the arrival of an electronic health record that some of the weight of health data management would be lifted from my shoulders. It’s enough just living with an incurable, disabling disease but to be responsible for ensuring the flow of information often makes life overwhelming.
Now it’s 2022 and I still have no access to my recorded health information and health history, and neither do most of my practitioners. My health data remains scattered across computerized systems of different health silos, specialists, institutions and provinces. This means my health providers are often working in the dark.
The past two years have reinforced how important it is for individuals themselves to have seamless access to their health data.
Immunocompromised patients have received so much conflicting information on COVID-19 vaccination, with eligibility differing between regions; we had to get letters from our doctors verifying our status and take these to vaccine clinics where we were often challenged on our eligibility. As high-risk patients, we are supposed to be a priority for new COVID-19 treatments that lessen the severity of the illness but few of us know how to access them.
In an era of “self-management,” patients are expected to play an even bigger role in managing their care but if we’re not given the tools we need, this is an impossible ask.
The Pan-Canadian Health Data Strategy Expert Advisory Group (PCHD) recently released the third report in a series outlining the foundational changes needed to achieve the healthcare system that Canadians deserve. The report calls for a ‘learning health system’ where data-driven insights lead to evidence-informed decision making across all health programs, services, surveillance and care delivery.
Central to this idea is the call for a ‘person-centred’ data system, where all health providers – and the patient — have timely access to an individual’s health data organized around the individual. The data would not be siloed by institution or provider but follow the patient. This would eliminate problems Canadians often encounter now, such as duplicative services, missed diagnoses, and inferior care.
It’s time to make this happen.
We need to finally make high quality and continuously improving healthcare possible through accurate, accessible, and meaningful health information.
Linda Wilhelm is President of the Canadian Arthritis Patient Alliance.