Connected Care for Canadians Bill

Moved the adoption of the report.

She said: Honourable senators, I rise today in my capacity as Chair of the Standing Senate Committee on Social Affairs, Science and Technology to move the adoption of the seventh report on Bill S-5, An Act respecting the interoperability of health information technology and to prohibit data blocking by health information technology vendors, as amended by the committee.

This bill comes before us at an important time. Canadians expect that their health care system will work smoothly and will support them when they need it most. A key part of that expectation is that health information can be shared safely and efficiently between those who provide care across the country.

The central purpose of Bill S-5 is to ensure health information technology that is licensed, sold or supplied by vendors is interoperable and prohibits data blocking by the vendor to promote a connected, secure and person-centred health system.

On April 15, the Standing Senate Committee on Social Affairs, Science and Technology began its study on Bill S-5. The committee held six meetings, heard from 32 witnesses and received 40 written briefs. These witnesses include, among others, the Minister of Health, officials from federal departments and agencies, professional organizations, health advocacy groups, physicians and IT vendors.

I want to take this opportunity to again thank all those who appeared before us or submitted briefs. Their testimony and expertise meaningfully informed our work.

On April 26, the committee had two meetings for Bill S-5’s clause-by-clause consideration. During that process, one amendment was adopted. Paragraphs (a) and (b) of the amendment were applied to pages 1 and 2 of the preamble. On page 1, paragraph (a) of the amendment replaces line 29 with “Whereas Parliament wishes to promote coopera-” and line 31 with “territorial governments, First Nations, Inuit and Métis Peoples and key.”

In the original version of the bill, the preamble did not include specific language emphasizing cooperation with Indigenous Peoples. This amendment was proposed based on recommendations from witnesses who called on the committee to recognize the distinctions-based nature of data collection and amended the term “Indigenous Peoples” in the preamble to “First Nations, Inuit and Métis Peoples.”

On page 2, paragraph (b) of the amendment adds the following before line 1:

And whereas Parliament affirms that the enabling of easy, complete and secure access to and use and exchange of electronic health information and the governance of data under this Act as that data relates to First Nations, Inuit and Métis Peoples must occur in a manner that respects Indigenous data sovereignty;

Paragraph (b) of the amendment was informed by multiple witnesses who told the committee that increasing data sharing without explicit protections risks eroding Indigenous governance over health information and reiterated the need to reinforce the principles of Indigenous data sovereignty in the bill.

At this time, there is no legislative framework on Indigenous data sovereignty, and co-developed stand-alone legislation may be required at a later time. The committee notes that this is the first occasion that the term “Indigenous data sovereignty” has been included in proposed federal legislation, and we hope action spurs further advancement and recognition of data sovereignty.

In addition, the committee also adopted one observation:

The committee observes that health information technology vendors constitute only one element of a broader health data ecosystem. Focusing solely on vendors is insufficient to achieve comprehensive interoperability and meaningful access to personal health information for Canadians. To fully realize the benefits of interoperable health data, the government should consider extending responsibility for the access to and exchange of electronic health information to all individual or institutional providers of health care.

This observation was adopted because the committee heard consistent testimony from both officials and witnesses that Bill S-5 serves as foundational, enabling legislation for improving the future of health care data here in Canada. Evidence presented highlighted that the current lack of interoperability contributes to widespread harm to Canadians’ health and well-being, increased burnout among health care workers, negative impacts on research and innovation and significant system inefficiencies costing nearly $10 billion annually.

However, focusing legislative efforts solely on health information technology vendors addresses only one part of a much broader and evolving ecosystem. Recognizing the complexity and changing nature of the health system, the committee underscored the importance of maintaining a high‑level, flexible legislative approach that does not prescribe specific mechanisms for data sharing but instead allows for a range of solutions to emerge over time and ensures the framework remains relevant in the years ahead.

A bill that only affects one part of the system is not enough to guarantee adequate access to health data for all. As such, it is important to keep the bill high-level and to support its applicability in the future, such as in 20 years’ time. There will be many solutions to this complex problem, and this observation leaves room to figure out the best strategies even into the future.

Before I conclude, I would like to take a moment to recognize the committee staff and members. I would like to extend our sincere thanks to all the committee staff: our clerk, Ferda Simpson; our analysts, Mayra Perez-Leclerc, Laura Blackmore and Diana Ambrozas; our law clerk, David Groves; and our administrative assistant, Osvaldo Lopes Da Silva.

Honourable senators, Bill S-5 marks a meaningful step toward a more connected, efficient and patient-centred health care system here in Canada. While it does not resolve every challenge within the broader health data ecosystem, it establishes a strong and necessary foundation for continued progress.

The committee’s amendment strengthens the bill by recognizing the importance of distinctions-based approaches and affirming Indigenous data sovereignty, and the committee’s observation highlights a need for broader system-wide engagement beyond technology vendors alone. By maintaining a high-level and flexible framework, this legislation allows for innovation and adaptation as our health system evolves over time.

Colleagues, in summary, the Standing Senate Committee on Social Affairs, Science and Technology recommends that the Senate pass Bill S-5, with our amendment and observation, which strengthen important aspects of the bill.

Thank you. Meegwetch.