Question Period Note: Health Data and Digital Tools

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• Digital systems across the country are highly fragmented leading to poor ability to collect, share and use health data. At present, only one third of Canadians can access some of their health data online. Clinicians cannot easily access or share health information because systems do not always connect. The lack of this available patient data can affect the quality and safety of care, add unnecessary or duplicative tests, and result in longer wait times and hospital stays.
• As the COVID-19 pandemic demonstrated, fragmented data is also a barrier to understanding how our health system is performing or responding to public health emergencies.
• As part of the Government of Canada’s announcement in February 2023 of nearly $200 billion over 10 years to improve health care for Canadians, federal, provincial and territorial governments are committing to working together to modernize the health system. This includes improving how health information is collected, shared and used, and adopting common standards and policies.
• These commitments will improve the quality and safety of patient care, provide decision makers with a more complete picture of the health care system, and help manage public health emergencies.
• Following announcement, some provinces and territories raised concerns about the collection and sharing of personal health information with the federal government. A subsequent letter from the Minister of Health to his provincial and territorial counterparts confirmed that only de-personalized data will be collected, shared, used and reported to Canadians, to promote greater transparency of results. .
KEY MESSAGES
• 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 and safer care while respecting their privacy.
• There are numerous barriers to achieving a modernized health data system that can only be addressed through federal, provincial and territorial governments working together.
• That is why new health care funding will support federal, provincial and territorial collaboration in modernizing the health system with standardized health data and digital tools.
• Canadians also deserve to know what progress is being made to improve the health system. Better collection, sharing and use of de-personalized health data will promote greater transparency of results.
IF PRESSED ON DATA PRIVACY AND SECURITY …
• Just as banks protect financial information, it is essential to ensure that health data is kept private and secure. As work to improve health data management advances, the Government is committed to collaborating and coordinating with partners to ensure that Canadians’ health data is protected.
• The Government of Canada will not create a single health data system or a national health care digital ID.
• Health data is already being shared with organizations such as CIHI. This is done in accordance with jurisdictional privacy or health information legislation and under data sharing agreements with each province and territory.
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 aggregated and depersonalised 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 DEVELOPMENT AND ENDORSEMENT OF THE PAN-CANADIAN HEALTH DATA STRATEGY …
• On May 29, 2023, the Government of Canada announced that federal, provincial, and territorial governments (except Quebec) have endorsed a Pan-Canadian Interoperability Roadmap, which will play a critical role in advancing key health data commitments as part of the Working Together to Improve Health Care agreement.
• The Roadmap outlines a long-term vision for a modern, well connected, world-class health care system that aligns with international standards.
• Through collective action with PTs and key stakeholders on health data governance, policies, interoperability, data literacy and public trust, we will continue to advance the goal of patient access to their own health data, removing barriers to data sharing and ultimately strengthen public health decision-making to help manage public health events.

The 2020 Speech and the December 2021 Mandate Letter to the Minister of Health acknowledged the need for a world-class health data system that is timely, usable, open-by-default, connected, and comprehensive.

The COVID-19 pandemic exposed challenges in how health information is collected, shared and used to inform decisions in response to public health events. It reinforced that federal, provincial and territorial governments, as well as stakeholders and Indigenous communities, need to work together to advance a pan-Canadian vision and plan to make it easier to collect and share health data for improved health care and health outcomes.

Building off lessons learned from the pandemic, and recognizing the critical importance of timely access to health data, FPT governments collaborated on the development of a Pan-Canadian Health Data Strategy (PCHDS), intended to modernize how health data is managed in Canada. The development of the strategy was guided by the advice of an Expert Advisory Group headed by Vivek Goel from the University of Waterloo. It responds to the May 2021 Office of the Auditor General report that recommended the creation of a PCHDS to address foundational issues related to health data in Canada. Guided by a common vision where health data follows individuals across points of care to support individual, clinical, and analytical access and use, the strategy identified common commitments and solutions to address persistent barriers to the use of critical health data, such as the need for clear and accountable governance, common policies and standards for health data, public trust and data literacy among Canadians, and a clear commitment to equity and Indigenous sovereignty.

Work on the strategy also complements an FPT Action Plan on Virtual Care and Digital Health endorsed by Federal-Provincial-Territorial Ministers in January 2022, which focused on advancing standards for digital sharing of health information and equitable access to virtual care. Virtual care and digital health also emerged from the pandemic as massive disruptors to the way care is delivered. This Action Plan tasked Canada Health Infoway (Infoway) to work in collaboration with the Canadian Institute of Health Information (CIHI), Statistics Canada and PTs to develop a pan-Canadian Interoperability Roadmap to guide the shared objective of a more connected health system through health technology and standardized data. FPT collaboration to date provides a strong foundation to advance standards to support interoperability and PTs are prioritizing the advancement of approaches to support interoperability.

This FPT collaboration set the stage for the February 7, 2023, Working Together to Improve Health Care for Canadians plan where the federal government announced it will increase health funding to provinces and territories by $198.6 billion over 10 years, including $46.2 billion in new funding for provinces and territories.

The commitment included $25 billion over 10 years to advance four shared priorities, including modernizing the health system through standardized health data and digital tools, through tailored bilateral agreements that will support the needs of people in each province and territory. To access their share of this funding, provinces and territories are asked to commit to improving how health information is collected, shared, used and reported to Canadians to promote greater transparency on results and to help manage public health emergencies. The commitments align closely with those of the PCHDS to:
o Share data with CIHI and develop common indicators.
o Work with Infoway, CIHI and Statistic Canada on common interoperability standards.
o Align policies and legislative frameworks to support patient access to their own data.
o Advance principles outlined in the Health Data Charter, including patient access to data, public engagement, equity, and Indigenous data sovereignty; and,
o Sharing public health data with the Public Health Agency of Canada to manage public health events.

The February 7th announcement also included $505 million over five years to CIHI, Infoway and federal data partners to work with provinces and territories on developing new health data indicators, and to support the creation of a Centre of Excellence on health workforce data and underpin efforts to use data to improve health care.

Moving forward, the federal government is poised to continue working closely with provinces and territories, stakeholders and experts to drive this agenda forward. Progress has already been made with the May 2023 release of a Shared Pan-Canadian Interoperability Roadmap, developed by Infoway, and endorsed by all PTs (with the exception of Quebec) which is a key element in delivering on the data commitments.

• Canadians have made it clear they want seamless, modern access to their care, but Canada lags other countries when it comes to providing citizens with access to their own electronic health information.
• Only one in every three Canadians can access some of their health information online. This proportion is similar for the health practitioners who care for us but cannot easily access or share our health information.
• Persistent and important gaps in data collection, sharing, and use negatively impact 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.
• On February 7, 2023, the Government of Canada announced nearly $200 billion over 10 years, including $46.2 billion in new funding for provinces and territories on four shared health priorities to improve integrated health care for Canadians, including modernizing the health system with standardized health data and digital tools. The funding was reconfirmed in Budget 2023.
- This funding will be distributed mainly through the Canada Health Transfer and $25 billion through tailor-made bilateral agreements with provinces and territories.
- $505M over five years will be provided to the Canadian Institute for Health Information (CIHI), Canada Health Infoway (Infoway) and federal data partners, to work with provinces and territories to advance standardized health data and digital health tools and accelerate efforts to use data to improve safety and quality of care for all Canadians.
• To access their share of the federal funding, provincial and territorial governments will commit to improving how health information is collected, shared, used and reported to Canadians to promote greater transparency on results, and to help manage public health emergencies.
• This will include an agreement to develop and use comparable indicators through CIHI and its data partners. A broader suite of indicators, including for Indigenous Health, will be developed in collaboration with provinces and territories, experts, CIHI and Indigenous Peoples.
• Building on the work by federal, provincial and territorial officials over the past several
years on health data and digital strategies, provinces and territories are also asked to agree to adopt common standards and policies related to data so that Canadians can better access their health information and benefit from it being shared between health workers, across health settings and across jurisdictions.