Difficulty in accessing and sharing electronic medical records frustrates clinicians and patients alike. Federal legislation could alleviate some of these problems, however.

Bill S-5, the Connected Care for Canadians Act, would require all health technology companies to adopt common standards that strengthen patient safety, improve access to health information, and make it easier to transfer information across various systems securely.

Currently, “the majority of systems, whether it’s hospital data, family medicine data, or public health data, are using very different technical and data standards, even when they’re measuring the same thing, such as a blood test or the result of a swab,” said Fahad Razak, MD, an internist at St Michael’s Hospital and Canada Research Chair in Healthcare Data and Analytics at the University of Toronto, Toronto.

Greater Data Access

The legislation builds on a health data interoperability roadmap developed by the nonprofit Canada Health Infoway. Health Canada emphasized that the bill would not create a central database of health information and would only apply in provinces and territories that don’t have similar legislation in place.

However, the legislation would prohibit companies from intentionally blocking the transfer of data, such as when they want to monetize that information. Data blocking can also occur unintentionally due to a lack of “good technical standards for information to be accessed or exchanged,” Razak said.

As a result of current limitations, “it becomes very hard to access any information that’s not directly within your own repository,” he added.

For example, a family medicine physician may have difficulty accessing electronic data on their patients’ visits to the hospital or a specialist. According to Health Canada, only 29% of primary care providers in Canada share patient information electronically outside their practice.

“Imagine trying to create a good patient assessment and management plan…without having access to that information [from other clinics, hospitals, and pharmacies],” said Razak.

Lack of health data interoperability also adds to the administrative burden for physicians, he said, as they search for information in multiple data repositories, re-enter data that exists elsewhere, or order duplicate tests because results are not readily available.

“There’s a real problem with burnout among physicians,” said Razak. “One of the things that’s cited most often is having to look for information in endless records and not being able to find what you need to provide care.”

On top of this, patients may struggle to access their own medical records, especially when they’re stored in multiple locations. Less than half of the people living in Canada can access their own health data, reports the Canadian Medical Association.

Aiding Health Management

Razak cautions that the legislation is not a panacea, but he believes it is a significant step forward. “It’ll allow us to have safer and more integrated information to make the best decisions for our patients. It’ll reduce the burden on clinicians due to information searching. And it’ll give patients more access to their information,” he said.

Glenn Thibeault, executive director of government affairs, advocacy, and policy for Diabetes Canada, said the national charity fully supports this bill. “This will ensure that individuals who live with chronic conditions like diabetes get timely access to lab results, medication histories, and other things that are essential for managing their own health effectively with their healthcare provider.”

Easy access to these data can also help patients with chronic conditions and their physicians be more proactive about managing their health, said Thibeault. For patients with diabetes, this might include monitoring when they last had their eyes, kidneys, or feet checked for complications related to their condition.

Abhi Kalra, executive vice president of connected care at Canada Health Infoway, said the legislation will improve equitable access to coordinated care. “Think about people in rural, remote, Indigenous, and underserved communities who often rely on virtual care and medical travel, but their information is not available when they go to the care setting,” he said.

“If they seek care within their community, outside their community, or even outside their jurisdiction, [having interoperable health data systems] would really help people to securely access and carry their health information without any barriers,” he added.

The legislation also is intended to support the development of emerging technologies such as AI, which could improve care, bolster health research, and empower patients to take charge of their own health.

“It really simplifies the market entry, improves the growth potential, and reduces the cost of development for Canadian innovators,” said Kalra, “because they know the information is not going to be blocked, and it is standardized.”

Kalra, Razak, and Thibeault reported having no relevant financial relationships.

Shawn Radcliffe is a freelance health and science journalist based in Ontario, Canada, with more than 15 years writing about general health, medical research, mental health, and other topics for print and online publications. Prior to this, he did laboratory and clinical research, and research administration at universities in Philadelphia and Portland, Oregon. He has a master’s degree in science education from Drexel University.