Question Period Note: Health Data and Digital Tools

• Persistent and important gaps in data collection, sharing, and use negatively impact personal, health professional, and system-wide health decision making in Canada.
• These gaps impair public health responses, reduce health outcomes for Canadians, and contribute to health inequities.
• Canadians should be able to securely access their own health information and benefit from it being shared between health workers and across health settings – allowing for better care while respecting their privacy.

• Canadians should be able to securely access their health information and benefit from it being shared between health workers and across health settings.
• We also need insights from health data to inform key decisions about our health system or public health events.
• The Government’s Working Together to Improve Health Care for Canadians plan provides close to $200 billion over 10 years for health care, including $25 billion over ten years to support provinces and territories through bilateral agreements.
• Modernizing the health system with standardized health data and digital tools is at the core of this plan.
IF PRESSED ON DATA PRIVACY AND SECURITY
• Robust federal, provincial and territorial privacy laws govern how personal health information is collected, used, stored and shared. Only authorized users can have access to patient records.
• Health information custodians and health IT vendors are responsible for safeguarding Canadians’ personal health information and must adhere to privacy laws to ensure proper handling, storage, and access to information.
• Just as banks protect financial information, it is essential to ensure that health data is kept private and secure.
IF PRESSED ON HOW HEALTH DATA WILL HELP THE CURRENT HEALTH CARE SYSTEM CRISIS
• One of the most impactful tools at our disposal to ensure improvements to the health system is data—to provide stronger evidence, inform better decisions and ultimately see concrete outcomes for Canadians.
• When data flows through digitally connected health systems, health providers can work better as a team to deliver higher quality and more efficient care.
• Likewise, when data flows back through the system to support research and decision-making, it can drive improvements in health care services and inform public health responses.
IF PRESSED ON THE PAN-CANADIAN INTEROPERABILITY ROADMAP
• In March 2023, a Pan-Canadian Interoperability Roadmap was endorsed by FPT governments (except Quebec).
• The Roadmap provides guidance to provinces, territories, health system managers and industry on common standards to support the secure transfer of health information from different systems and to patients themselves.
• Led by Canada Health Infoway, FPT governments are collaborating on common standards needed to improve patient access to their electronic health information and remove barriers to data sharing among health care professionals through a secure, digitally-connected system.
• Federally, we are exploring possible legislative and regulatory mechanisms to support our national interoperability strategy.
IF PRESSED ON PAN-CANADIAN HEALTH DATA CHARTER
• In October 2023, the Pan-Canadian Health Data Charter was endorsed by FPT Health Ministers and made public. It reaffirms a common set of principles intended to guide collective action towards a shared vision for health data in Canada.
• The Charter highlights principles related to person-centric health information, equity, public engagement and trust. It also highlights Canada’s commitment to respecting Indigenous data sovereignty and Indigenous-led health data governance.
• As work continues to advance the Working Together plan, the Government is committed to upholding the Pan-Canadian Health Data Charter to guide collective action.
IF PRESSED ON THE NUMBER OF CANADIANS WHO HAVE ACCESSED THEIR HEALTH INFORMATION ELECTRONICALLY
• In Canada, the percentage of Canadians who access their health information electronically varies between studies. For instance, a 2023 Statistics Canada survey states that 51% of Canadians accessed their personal health information electronically (vs. 37% reported in CIHI’s Snapshot report).
• This can likely be attributed to broader wording of Statistics Canada’s question where use of digital tools and services is bundled with ‘access to data’, including prescription renewals and online appointments. In comparison, the source data used by CIHI reports on these separately.

Digital Health and Health Data

Digital health systems across the country are highly fragmented leading to poor ability to collect, share and use health data, negatively impacting personal, health professional, and system-wide health decision making. These gaps impair public health responses, reduce health outcomes for Canadians, and contribute to health inequities.

Since the COVID-19 pandemic, federal, provincial and territorial governments have been collaborating closely to advance a shared goal of developing a world-class health data system which will help:

• Canadians better manage their own health by improving access to their own electronic health information;

• Health care providers make more informed decisions and work better together through improved flow of health data across care settings;

• Researchers and innovators access the data they need to develop new therapies and treatments; and

• System administrators and decision makers use comprehensive and comparable health data to guide improvements Canada’s health care system, transparently measure results, and better prepare and manage for public health events.

Federal Commitments and Investments

The 2021 Speech from the Throne and the Minister of Health’s Mandate Letter commit to continued collaboration with provinces and territories to accelerate work towards a world-class health data system that is timely, usable, open-by-default, connected and comprehensive.

Extensive federal, provincial and territorial collaboration has occurred since the COVID-19 pandemic to make progress on this commitment, including through the advancement of a Digital Health Action Plan to improve access to virtual care and digital tools. Based on the advice of an Expert Advisory Group on health data, governments worked together to develop the components necessary for a pan-Canadian health data strategy that included focus on improved health data governance, common standards for data sharing, modernized and aligned health data policies that meet the digital age, and enhanced public engagement to build better trust and literacy of health data.

Building on these efforts, Budget 2023 outlined the federal government’s plan to provide close to $200 billion over ten years in health transfers to provinces and territories, including $46.2 billion in new funding through new Canada Health Transfer measures, tailored bilateral agreements to meet the needs of each province and territory, funding for personal support workers, and an increase to the Territorial Health Investment Fund. In addition, Budget 2023 announced $2 billion over 10 years to address Indigenous health priorities and $505 million over five years, starting in 2023-24, to the Canadian Institute for Health Information (CIHI), Canada Health Infoway, and other federal data partners.

Canada Health Transfer Five Percent Guarantee: The federal government will provide top-up payments to achieve Canada Health Transfer increases of at least five percent per year for the next five years. The last top-up payment will be rolled into the Canada Health Transfer base at the end of the five-year period, resulting in a permanent funding increase. This represents an estimated $17.1 billion over ten years in additional funding through the Canada Health Transfer.

Tailored Bilateral Agreements: The federal government is providing $25 billion over ten years through a new set of bilateral agreements to address individual provincial and territorial health system needs, such as expanding access to family health services, supporting health workers and reducing backlogs, increasing mental health and substance use support, and modernizing health systems through standardized health data and digital tools.

Bilateral agreements are intended to be flexible, and provinces and territories have options to tailor their respective Action Plans in response to the unique needs of their populations and geography.

To access their share of the federal funding, provincial and territorial governments have committed to improving how health data is collected, shared, used and reported to Canadians to promote greater transparency on results, to help manage public health emergencies, and to improve access to Canadians’ own health information.

Recent FPT Collaboration on Digital Health and Health Data

Building off lessons learned from the pandemic and recognizing the critical importance of timely access to health data, FPT governments are collaborating to modernize how health data is managed in Canada.

Federal, provincial and territorial governments have been collaborating on health care priorities and achieved key results, including the development of a Shared Pan-Canadian Interoperability Roadmap. The Roadmap, published by Canada Health Infoway and endorsed in March 2023 by FPT Health Ministers (except Quebec), outlines the path forward for safe and secure access to health information that can flow easily between different parts of the health care system, allowing patients and providers to work together more effectively.

In October 2023, Health Ministers approved a Joint FPT Action Plan and a Pan-Canadian Health Data Charter to drive progress on the health data commitments of the Working Together plan. The five key priorities in the Action Plan include:
• Collecting and sharing high-quality and comparable depersonalized information needed to improve health care for Canadians
• Implementing aligned provincial and territorial health data policies and legislative frameworks to support the public good
• Advancing principles outlined in the Health Data Charter for the management of health data
• Collecting and sharing public health data to support Canada’s preparedness and response to public health events.
• Adopting common interoperability standards guided by the Pan-Canadian Interoperability Roadmap to better connect Canada’s healthcare system

In driving progress towards implementing the standards from the Roadmap and realizing a vision of a modernized, connected health system, the federal government is also exploring the best mechanisms to drive the adoption of common standards, such as possible legislative and regulatory frameworks.

The Working Together plan also includes an agreement to develop and use comparable indicators, working with CIHI and its data partners. In addition to the eight common headline indicators, for which data has already been made public in August 2023 through a snapshot report published by CIHI, a broader suite of indicators for the shared health priorities, as well as for Aging with Dignity and Indigenous Health, are being developed in collaboration with provinces and territories, experts, CIHI and Indigenous Peoples.

• We know that Canadians want digital access to their entire health record and want their primary care provider to have this complete access as well.
• A recent report from 2023 shows that less than 40% of Canadians have accessed their health information online.
• Less than 2 out of 5 Canadian doctors reported sending patient information electronically to other doctors involved in their patients’ care.
• A modernized health system with standardized health data and digital tools is a shared health priority identified in the Government’s plan for Working Together to Improve Health Care for Canadians.