Ottawa revives bill to connect health records

OTTAWA – The federal government is reviving legislation that would allow digital health information to be shared safely across electronic systems, giving both patients and providers access to more comprehensive medical records. The Connected Care for Canadians Act was introduced in June 2024 and passed first reading, but the bill died when Parliament was later prorogued.

Bill S-5 was tabled in the Senate last week and will have to go through the Parliamentary process to become law, the Canadian Press reported.

Canada’s health data system is “fragmented and siloed” and incomplete health records can compromise patient care and safety, Health Canada said in a background briefing for media.

“We need to break down those silos. So, we are changing the rules and we are building the health data infrastructure Canadians deserve,” health minister Marjorie Michel (pictured) said while announcing the bill at a news conference in Ottawa.

Health Canada said health data is locked in different systems in hospitals and doctors’ offices that are often incompatible with one another.

If passed, the legislation would establish standards that companies developing electronic medical records must follow, allowing data to be shareable between healthcare providers and across provinces and territories.

The legislation would also prohibit health information companies from imposing unnecessary restrictions on information access or sharing, while still ensuring patient privacy regulations are followed.

“By adopting common standards, including security standards, we will ensure healthcare serves patients, not the profit of shareholders,” Michel said.

Health Canada said 95 percent of physicians use electronic systems, but still commonly use fax and paper referrals because the digital systems between providers don’t connect.

“Better connected care will contribute to safer, more integrated and higher-quality care, less burden and burnout for providers, and patient empowerment in managing their own health,” a department official said in the background briefing.

Health Canada said some provinces and territories are already working on a voluntary work plan to develop systems that are compatible with one another and that enable patients to access their own records.

Comprehensive digital health information will also “improve equitable access to co-ordinated care, particularly in rural/remote regions and Indigenous and underserved communities that rely on virtual care and medical travel,” the department said.

In addition to providing better care and health information access for patients, Health Canada said harmonized systems will allow de-identified data to be used for research, improving the healthcare system, informing public health responses and powering AI advancements.

Anderson Chuck, president and CEO of the Canadian Institute for Health Information (CIHI), joined Michel at the news conference and underscored the importance of the proposed legislation for both patient care and research.

“Canada’s diversity and single-payer model has created one of the most valuable health data sets on Earth,” Chuck said.

“Too often the benefits are missed. Canadians feel its effects every day through delayed care, missed insights, having to repeat information over and over again, leading to the system that cannot respond to their needs quickly enough.”

Many organizations applauded the revival of the connected health data legislation, including the Canadian Cancer Society (CCS). “When health data can move seamlessly across our healthcare system, everyone benefits – including people with cancer,” said Andrea Seale, CEO, Canadian Cancer Society. “Effective data sharing gives people access to their own health information, helping them to better understand their health and the agency to make decisions that best serve their unique needs. It also provides healthcare professionals a fuller, clearer picture that supports more responsive, equitable and effective care across Canada.”

The Canadian Nurses Association asserted in a news release that, “Canada’s healthcare systems continue to lag behind other sectors in adopting connected technologies. Currently, more than 70% of electronic health information is not accessible to healthcare providers to support integrated service delivery across the continuum of care. These barriers are preventing Canadians from receiving high-quality, safe, patient-centred care and having seamless access to their secure personal health information.”

Dr. Kimberly LeBlanc, president of CAN, said: “The Canadian Nurses Association supports efforts to modernize the sharing and use of health data across Canada. Secure, timely access to personal health information is essential for nurse practitioners and nurses to deliver high-quality, coordinated care and improve patient outcomes. This legislation represents an important step toward more connected health systems that empower patients, strengthen continuity of care, and enable nurses to work to their full scope of practice as they advance Canadians’ overall health and well-being.”