When Margot Rejskind’s husband, Richard Bird, was diagnosed with stage 2 lung cancer in March of 2022, the Charlottetown couple thought they would have time to treat it.
But what started as a severe cough progressed rapidly and painfully, spreading to Mr. Bird’s bones and leading to his death at the age of 70 that August.
Throughout the treatment, Ms. Rejskind – a professional musician and conductor – felt she was being given little information about his condition, and not much control over what was being done. Although she was her husband’s primary caregiver, she often wasn’t informed about things as basic as test results.
That September, she requested her late husband’s full medical record file from the PEI hospital where he died. After six months of back-and-forth, she received some records but she suspected key information was missing.
Frustrated by the situation and feeling stonewalled by the hospital, she filed access to information requests to the provincial health authority. In July of 2024 – nearly two years after Mr. Bird died – she received everything, including communications between medical staff.
What she found shocked her.
Included were test results that had never been communicated to her, including one showing her husband had tested positive for a KRAS gene mutation. This meant he likely had an aggressive type of lung cancer that would not respond well to some treatments.
Not knowing this, she thinks now, caused undue distress. “I was calling people and saying, ‘I know he’s not supposed to be worse, but he’s worse.’ And they were really not taking me particularly seriously,” she said.
Now, she believes if she’d had access to more information, she could have made crucial decisions differently. “I could have said, ‘Look, he has this thing that we know can be clinically significant. Could this be making it more aggressive?’”
She is still not clear whether the doctors did not know about the results, or did know and didn’t communicate them to her.
At the Charlottetown home she shared with Richard Bird, Margot Rejskind still wonders how his terminal illness might have turned out differently if she'd had more access to his medical records and test results.Nathan Rochford/The Globe and Mail
Ms. Rejskind’s story is just one example of how a fragmented medical-records system, and one that is inaccessible to patients, can affect decision-making, and possibly even health outcomes.
Records are spread out between hospitals, doctors’ offices, pharmacies and other points of care. Some offices still work on paper records and faxes, and even for those that have moved to electronic records, different software doesn’t connect with each other. As a result, patients can have difficulty accessing their own records, and health-care providers can’t share information.
This can lead to consequences as mundane as time wasted filling out paper forms and inputting them into computers, to more serious situations like pharmacists prescribing drugs that cause an adverse reaction because they don’t know a client’s full medical history. In the worst case scenario, a patient may miss out on critical information that could influence their treatment, as happened with Ms. Rejskind and her late husband.
The federal government said it would help address the problem in its most recent health care agreement with the provinces, but a bill to set national standards and ensure interoperability of systems died when Parliament was prorogued in the New Year. The health minister’s January letter directing provinces to add non-physician health professionals – such as nurse practitioners and pharmacists – to public insurance in the next year threatens to exacerbate difficulties as entirely new systems are brought on board.
But there are people working to fix this. Innovative companies are developing technologies to help health care providers cut through bureaucracy. And some jurisdictions are doing their part, with provinces trying out solutions like getting groups of hospitals to use a single software provider.
Government leaders know what’s at stake. “Right now we have a data system that is siloed, where everything is disconnected,” said Mark Holland, the former federal health minister for Justin Trudeau. “That creates not only a health system that is much slower and less responsive, but frankly, it’s costing us lives.”
Disconnected systems
Behind the reception desk of Platinum Medical Clinic in east Toronto is a familiar sight in doctor’s offices across the country: shelves of white folders adorned with colour-coded labels that contain patients’ records.
Less common are the posted signs informing patients that an AI tool will listen in on their appointments to help their doctor take notes.
Rosemarie Lall, one of the clinic’s family physicians, says she has tried to stay at the forefront of electronic medical record technology.
But out of necessity, her office has had to keep a foot in both the analog and digital worlds.
When her office moved to electronic records in 2009, it was too time-consuming to input all the information from paper records into a computer – so for years she would refer to both. That happens less and less, although her problem now is figuring out what to do with all the paper she no longer needs.
“I guess we could destroy it,” she said of the files. “But again, that’s a cost. We could store it elsewhere. That’s a cost. This is just where we have it right now.”
Joss Reimer is president of the Canadian Medical Association, whose survey of electronic record-keeping found gaps in the systems for sharing that information.John Woods/The Canadian Press
Family doctors bill public insurance plans, but otherwise most offices are operated as independent businesses. That means it’s up to the doctors and the staff they hire to do everything from keeping the bathrooms stocked with toilet paper to managing complicated IT systems.
Keeping up to date with the software can be a challenge, said Joss Reimer, a Manitoba physician and president of the Canadian Medical Association.
“Many provinces provide some funding to set that up in the first place, but the ongoing costs are something the physician has to pay personally,” she said.
The number of doctors’ offices that have adopted electronic health record systems has soared in recent years. A 2024 survey commissioned by national nonprofit Canada Health Infoway and the CMA found 95 per cent of physicians used electronic records, up from 82 per cent in 2017 and 39 per cent in 2010.
But, the survey noted, those systems were not operating at full efficiency. Seventy-three per cent of doctors said poor integration between different systems was a major challenge and only 29 per cent said they could share information with patients and providers outside their practice. A third said they spent two or more hours per workday looking for patient information, and extra paperwork has been cited in other CMA surveys as a key factor contributing to doctor burnout.
The difficulty of sharing information is a problem that Dr. Lall said she runs into constantly. For example, a patient wanted to give her access to their hospital records through MyChart, one of the most widely used electronic health record systems at hospitals across North America. Dr. Lall’s office was contacted by the hospital via a fax. To access the records, Dr. Lall said, she had to go on to her computer, retype the information from the faxed page, download files, make a new document in her office’s health-record system, and then import the information from the downloaded files.
With how busy her office already is, she asked: “Do you think I have time to do that? Do you think my staff have time to do that?”
Hospitals, like this one in Surrey, B.C., may also encounter record-related roadblocks when admitting new patients whose medical histories could be vital to treating their ailments quickly.Jonathan Hayward/The Canadian Press
The difficulties can go the other way, too. Andrew Petrosoniak, an emergency-room doctor in downtown Toronto, said he is frequently exasperated by his inability to access records for patients who come in with serious conditions.
He recently had a woman come into the ER who was experiencing abdominal pain. She had just received an ultrasound scan at an imaging clinic, but she did not have the images and he was not able to easily obtain them.
Given the patient’s symptoms, he said, there was danger it could be an ectopic pregnancy – where a fertilized egg has implanted itself outside of the uterus – which would require emergency care. The same symptoms could signal a miscarriage or something else that does not require immediate intervention, but because of the risks, he had to order another ultrasound, tying up more health resources and putting the patient through more stress and anxiety.
“To not have that information at your disposal does the patient a disservice,” he said.
The problem is expected to get even worse in the coming months as public insurance starts covering more health-care services.
In January, the federal government issued a long-awaited directive to provinces saying that more health care should be covered by public insurance, specifically medically necessary care provided by non-physicians such as nurse practitioners and pharmacists. The changes will go into effect next year.
But different professions also tend to use different record management systems. So although more practitioners means more access to health care, it’ll ultimately compound the problem of information sharing.
“We already struggle being able to have physicians communicate with each other,” Dr. Reimer noted.
Bridging the gaps
In the basement of a downtown Toronto hotel on a recent winter day, dozens of coders in colourful T-shirts have taken over a conference room. They have come from different provinces and countries, from the corporate world and government and academia, to share notes on a universal problem: how to get their health-data systems to talk to each other.
The event is part of a conference organized by IHE International, a global nonprofit whose acronym stands for Integrating Health Enterprises. Their raison d’etre is to convince corporate rivals and their government clients to work together to solve the industry’s struggles with interconnectivity.
“We have some rock stars here,” Michael Nusbaum, an IHE board member who lives in Victoria, B.C., tells a small clutch of reporters.
He points to a bespectacled man with close-cropped, salt-and-pepper hair, wearing a black T-shirt and jeans, who is focused intensely on the lines of code on his laptop. “This guy right here, he invented the FHIR specification,” Mr. Nusbaum said, referring to the Fast Healthcare Interoperability Resources standard that has already been used around the world to successfully help data systems communicate with each other.
Grahame Grieve of Australia – the rock star in question – is working that day not so much on the connections between systems as on the communications between doctors and patients.
“I’m trying to figure out how much a patient wants to say about their allergies,” he said.
He shows a form he is building where a patient can fill out fields to indicate the symptoms they are experiencing. It’s a relatively straightforward task from a coding perspective; the challenge is in how to collect information from a patient who is unfamiliar with medical terminology, and then translate and present that to a clinician in a way that would be useful for them.
That type of puzzle, more about how to communicate information rather than just accurately capture it, is echoed across the field. Abhi Kalra, executive vice-president of Canada Health Infoway, a nonprofit that helped organize the IHE conference, said the barriers facing the health-data system are not all technical in nature.
“I think technology, to me, is 30 per cent of the problem,” he said.
The rest is about governance and shared standards.
Software companies have historically had little motivation to work together. In 2022, the federal Competition Bureau released a study on the health-data industry that noted the software market for doctors’ offices was dominated by just three companies – Telus Health, Well Health and QHR (owned by Loblaw) who had “no financial incentive nor are they required by law to be interoperable.”
In addition to the difficulty of sharing information between them, the study highlighted how difficult it was for a doctor’s office to switch providers. If a doctor wanted to move its records from one system to another, companies would charge high fees, not do so in a timely manner, or not provide the records in a usable format, the bureau said.
Martin Belanger, senior vice-president of payor and provider solutions at Telus Health, said he disagreed with the bureau’s report. He said companies like his want to be more interoperable, but that it’s a struggle to harmonize 10 different provincial privacy and data-handling standards that are not co-ordinated. And he said the company takes its security obligations seriously and wouldn’t want to take any actions that could inappropriately share a patient’s confidential health information. “We’re in the trust business,” he said.
Findings by the federal Competition Bureau question whether the handful of e-service providers for Canadian doctors are willing to co-operate.Sean Kilpatrick/The Canadian Press
But some of these obstacles are finally starting to be tackled.
Mr. Kalra said one reason for this is shifting market dynamics. Health-care providers – particularly hospitals – are getting fed up with not being able to share records, and they are making openness a part of procurement decisions.
Companies “realize that they will be left out of the broader ecosystem if any EMRs are not able to share patient information within the hospital system,” he said, referring to the acronym for electronic medical records.
Another major push is coming from the federal and provincial governments.
In 2023, Ottawa made health data part of its funding negotiations with provinces. “We were using that process, which is normally just a transaction – ‘Here’s some money, provinces, go do your thing’ – we’re using this as an opportunity to advance these digital health priorities,” Mr. Holland said.
Much of that focus was on reporting requirements, so Canadians had a better idea of how the provincial health systems were performing. But part of it, too, was the issue of interoperability. Ottawa followed up the work with a bill in the summer of 2024 setting new standards on information sharing, but the bill died when Parliament was prorogued. It will be up to the next government to decide whether the work will be resurrected.
In the meantime, provinces are putting into place their own initiatives. Late last year, Alberta mandated that all acute-care centres make their records interoperable by all choosing a single platform, the one designed by U.S.-based firm Epic, which operates MyChart.
And last summer Nova Scotia and Telus Health worked together on a new app, called YourHealthNS, that would allow patients to access their own medical records. It is part of a wider series of reforms the Atlantic province has made to cut down on doctors’ paperwork, which also includes restrictions on employers requesting sick notes.
Rishi Nayyar, right, co-founded PocketHealth with his brother Harsh, left, whose platform helps hundreds of health providers share records electronically.Christopher Katsarov/The Globe and Mail
More control for patients
For Rishi Nayyar, personal frustration has been a fuel for innovation.
A decade ago, his brother was given the results of an X-ray on a CD. The two of them were perplexed by the use of what they considered antiquated technology, and so leaned on their professional backgrounds – in finance and tech – to start a new company, PocketHealth, which would develop a way to share medical images through the cloud. Their platform is now used by more than 800 health-care providers across North America.
PocketHealth, based in Toronto, allows patients to download images or share them with a provider – giving patients more control over their records and providing a solution to the interoperability challenge, Mr. Nayyar said.
The platform provides its services to patients in different tiers that range from free to $49 per year.
“No one had taken a consumer-tech mindset to solving some of these health-care problems,” he said. “Everyone that tries to solve these problems thinks top-down infrastructure will solve it. It’s an information architecture problem. We solved it from bottom-up – meaning, I’m a patient, how do I want to interact with this?”
Genni Butt, a school principal in Burlington, Ont., started using PocketHealth while hospitalized in 2021. Since then, she has continued to use it while receiving treatment for back pain to help co-ordinate her care between hospitals, her family doctor and physiotherapists.
“It definitely makes me feel I have control of my care,” she said. “Because I’m able to just access it whenever I want, wherever I want, right?”
Databases of digitized health records could be a valuable resource, too.
Phil Boyer, a researcher at Inovait Network at Sunnybrook Hospital who authored a report on health data, said anonymized patient data could be useful for public-health research and to support innovation. For example, a company developing an artificial-intelligence tool to scan medical images for signs of disease needs these kinds of records for training.
As seen in Dr. Lall’s office, AI is already helping some doctors with note-taking.
Her computer listens to conversations with patients, translates the discussion into a medically accepted format that she inputs into patient records and then checks for accuracy.
She said it’s been a huge time saver and lets her devote more attention to patients and keep more people on her roster. “I needed something to lessen my burden of notetaking, or else I am seriously looking at scaling back my clinic,” she said.
Still, while technology has made major strides in some areas, she believes there’s still gaps that make it unnecessarily hard for patients and doctors to use.
“You need to build systems with people in mind. I don’t think we’ve done that yet.”
How other countries handle electronic medical records
Australia
Australia passed the My Health Records Act in 2012, and shortly after that a national electronic records system went live. Patients can view their records in a government-controlled app. The system is widely used in hospitals, but the government is still working on getting other health-care providers to feed records into the system.
European Union
The European Commission first proposed a framework to unify health record systems between and within EU countries in 2022. The regulation to create a European Health Data Space came into effect in March, though rules will be phased in over the next several years.
Saudi Arabia
The country is working with the World Health Organization on a digital health record system for Muslims taking part in the Hajj pilgrimage, which sees roughly 3 million people come to the country annually. The initiative allows participants to have a summary of their medical information encoded into a QR code – called the Hajj health care – that Saudi health-care providers can scan for quick access to records. More than 250,000 pilgrims from Indonesia, Malaysia and Oman took part in a pilot project last year, and more are expected to join the program this summer.
Access-to-information basics
If you have had trouble accessing your own records, you can try obtaining them through an access to information request. The Secret Canada website has more information, including a template letter you can use to make your request. Read more here.
Reporter Tom Cardoso has filed many freedom-of-information requests in his work at The Globe and Mail. Here’s what you need to know about navigating the system once you have filed your request.
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