Don't have a copy of your medical record? You're not alone. Health experts say it should be an election issue

When a cyberattack took multiple hospitals in southwestern Ontario offline for weeks, Kale McMurren's cancer treatment had to move to another health-care centre two hours away. 

The October 2023 attack meant that McMurren's digital health records through Windsor Regional Hospital were unreachable. In order to get his medical history to the hospital in London where he was being transferred, McMurren says hard copy files were faxed over. 

If McMurren had his own copy, he could have brought the files himself to London. 

"I agree that having [my] medical records would help me in [that] situation," he said. 

At the time, the five hospitals targeted in the cyberattack told hundreds of thousands of patients that with systems down, doctors might not have past records or medical history, a person's current list of medications or reports from other clinicians involved in their treatment. 

A cyberattack is just one example where giving patients access to their medical records can be helpful. There was legislation in the works before the federal election was called that would have enshrined that access into law — but it was effectively thrown out with Parliament prorogued.  

Advocates and experts hope the issue, and re-introducing the legislation, will be a priority for the next elected government — but there's been little mention of the issue throughout the federal election campaign. 

"[It] is not a sexy topic, but it is the foundation for the future of the health-care system," said Flavie Laliberté, a patient partner at McGill University Health Centre who advises on digital health improvements. 

Majority of Canadians still don't have access

While a growing number of Canadians have been able to digitally access some of their medical information in the last five years, the majority haven't. 

Early survey data shared with CBC News from Canada Health Infoway, a government funded organization that is working on a connected cross-country health-care system, reports 47 per cent of Canadians accessed some of their medical information in 2024. 

That's up from about 27 per cent in 2020, the organization reports.  

Depending on where you live in the country, you could have more or less access — that's because each province and territory has been creating its own patient portals. 

The goal of Canada Health Infoway is to help digitize, standardize and connect the systems across the country, says Abhi Kalra, the organization's executive vice-president. 

For example, Kalra says, a patient's prescription information might be sitting in pharmacies, their vaccination record might be in a provincial information bank and then their family doctor would have a separate system with notes from those appointments. 

Bringing all of that data together to create a "comprehensive real-time view of your health record," for health-care providers is the next step, says Kalra.

Why does this matter? Comprehensive health records not only make the system more efficient, but can help empower you to be informed and engaged with your health care. 

Currently, the sharing of scans or tests between doctors and specialists is fragmented across the country, which reports show can increase the likelihood of medical errors and harm to patients. 

Patient adviser and advocate Laliberté says it's like a game of hockey. 

"The health patient data is the puck and the clinics, the pharmacists, the hospitals, those are the players," she said. 

"And the players need to be able to share that data to be able to score, in order to improve efficiency, improve access [and] avoid errors." 

Dr. Tara Kiran, a family doctor at St. Michael's hospital in Toronto, knows the problem well. 

"All too often actually ... I don't have all the pieces of information of where a patient has been in the healthcare system and the different tests they've had," she said. 

She added that making legislation that ensures Canadians have access to their medical records could help speed up the process. 

"I feel like if we take that step in Canada, it will actually force many of the players, or all of the players, to step up and make the changes needed," she said. 

Legislation in limbo

Last summer, then-federal Health Minister Mark Holland put forward Bill C-72, the Connected Care for Canadians Act.

The bill would have allowed patients to securely access their personal health information and allow health-care providers to share it, such as between specialists at hospitals and doctors or pharmacists working in the community.

It also would have required technology companies to make their health information software compatible with each other.

"Bill C-72 will actually legislate the sharing of information and that's significant," said Shelagh Maloney, CEO of advocacy organization Digital Health Canada. 

But since Parliament was prorogued before the bill passed, it's technically been thrown out. If it's a priority for the next government, it will need to be reintroduced once Parliament resumes. 

Why is Canada so behind? 

When asked why Canada isn't further along in this process, Toronto doctor Kiran said, "we haven't put patients first." 

"Instead, I think we've often put the interests of individual provider organizations or companies ahead." 

Other countries like Denmark and Spain, she says, have had legislation and more technologically advanced systems in place for years. 

Maloney from Digital Health Canada agrees that patients haven't been at the forefront, and says changing that culture is one of the challenges. She also points out that legislation can limit the ability to share information between provinces. 

Canada Health Infoway's Kalra says one of the key challenges is that parts of the system are still shifting from paper to digital — like prescriptions and referrals. 

But he repeatedly said that because this is a priority across the health sector, Canada will get there — it's just unclear when. 

What do the parties plan to do? 

None of the online platforms from Canada's four main parties directly mention the Connected Care for Canadians legislation.

In an email, a spokesperson for the Liberal Party directed CBC News to their online platform, which says a Liberal government will table legislation to "ensure Canadians can securely access their health care data." 

Meanwhile, an NDP spokesperson said in an email that the party "strongly" supports better access to patient information and blames the Liberals for delaying the legislation. 

"Canada needs a legislative framework designed to enhance the timeliness and security of access to health information for both patients and healthcare providers," reads part of the party's statement. 

In an email to CBC News, Guelph Green Party candidate Anne-Marie Zajdlik, a physician and "advocate for equitable care," commented on behalf of the party. 

She said the Greens would revisit Bill C-72 and that the party supports legislation that "enshrines the right of every Canadian to access their health records," and would bring Canadian governments together to "develop secure, interoperable digital health systems." 

The Conservative Party did not respond to a request for comment.