Question Period Note: PAN-CANADIAN HEALTH DATA STRATEGY

COVID-19 has highlighted new and existing issues that make it a challenge to collect, access, share, and use health data for the benefit of Canadians. 'Health data' includes public health, health system and population health data. In the May 2021 Office of the Auditor General report Pandemic Preparedness, Surveillance, and Border Control Measures, it was recommended that Canada create a Pan-Canadian Health Data Strategy (PCHDS) to address foundational issues related to the collection, access, sharing and use of health data in Canada. In his mandate letter released December 16, 2021, the Minister of Health was tasked with working with the provinces and territories to create a world-class health data system for Canada. In Budget 2022, ensuring access to reliable, comparable health data was identified as a key element to strengthen our health care system. To achieve this, the Government of Canada is following the advice of the Auditor General and creating a PCHDS through federal, provincial and territorial partnership with advice from an Expert Advisory Group. The EAG published its third and final report for the Government of Canada on May 3, 2022.

• Reliable, timely and relevant health data are crucial to inform decision-making during public health events and to improve health outcomes for Canadians in the longer term.
• The Government of Canada, in collaboration with provinces, territories and Indigenous groups, is developing a Pan-Canadian Health Data Strategy to improve Canada’s collection, access, sharing and use of health data and lay the foundation for a world-class health data system.
• This work will assist Canada’s public health response to COVID-19, equip Canada to deal more effectively with future public health events, and achieve better health outcomes for Canadians through the better use of health data.

If pressed on recommendations in the final report of the Expert Advisory Group
• In its final report, the EAG recommended governments work together to expedite the creation of a person-centred, world-class health data system.
• The advice contained in the latest report of the EAG will be considered by the Government of Canada, provinces and territories and our health data partners as the co-development of the Pan-Canadian Health Data Strategy continues.

If pressed on public engagement
• Canadians should have a say in how their health data is used, so consultation and engagement are key for this work.
• Our Government will be engaging broadly on the strategy to hear Canadians’ views on how health data can serve them better, both during and between public health events.

If pressed on privacy
• Our government knows that Canadians value the privacy of their health information and want it to be appropriately safeguarded.
• Canadians also expect that their data would be used to inform public health measures, stimulate research on new treatments and improve our health care systems.
• Our government’s approach to strengthening health data collection, access, sharing and use recognizes Canadians’ rights to have their personal information protected while benefiting from the insights that can be generated by sharing it.

If pressed on Budget 2022 commitments
• Our government recognizes how important it is to be able to effectively
anticipate and respond to public health risks that threaten the health and safety
of Canadians. It is crucial to take immediate steps to improve our
surveillance and data capabilities so we are better able to detect and respond to public health events and emergencies in the future.
• That is why our government has commited to supporting the Public Health Agency of Canada to strengthen key surveillance and risk assessment capacities, including through the implementation of the Pan-Canadian Health Data Strategy.
• In addition, the federal government has committed to work with provinces and territories to ensure that the health care system is underpinned by health data that supports system improvements and Canadians’ access to their own personal health records.

Pan-Canadian Health Data Strategy

Health data (which encompasses public health, health system and population health data)
are collected by numerous organizations and governments. However, as SARS and COVID-19 have demonstrated, there are persistent and important gaps in data collection, access, sharing and use that cost lives and negatively impact personal, health professional and system-wide health decision-making. Overall, these impacts reduce health outcomes for Canadians.

In December 2020, the Government of Canada, in collaboration with provinces and territories, began developing a Pan-Canadian Health Data Strategy. In the May 2021 Office of the Auditor General report, Pandemic Preparedness, Surveillance, and Border Control Measures, it was recommended that Canada create a Pan-Canadian Health Data Strategy (PCHDS) to address foundational issues related to health data in Canada. The November 2021 Speech from the Throne underlined the importance of improving data collection across health systems to inform future decisions and ensure the best possible health results for Canadians. In the December 2021 Office of the Chief Public Health Officer report, A Vision to Transform Canada’s Public Health System, it was recommended that Canada create a world-class public health system and noted that the PCHDS is an actionable idea to improve public health tools. The December 2021 Mandate Letter for the Minister of Health acknowledged the need for a health data system that is timely, usable, open-by-default, connected, and comprehensive. Most recently, the Minister of Health was tasked through the mandate letter and the Federal Budget 2022 to establish the foundation of a world-class health data system so that all Canadians have meaningful, timely access to their own health information.

The goal of the Strategy is to identify commonly-supported, implementable solutions to address persistent barriers to the use of critical health data. Once identified, and when supported by provinces and territories, Canadians will be better served by their own health data, accelerating the transformation towards person-centred health care systems and strengthening public health decision-making during and between health emergencies.

Pan-Canadian Health Data Strategy Engagement

Canadians should have a say on how their health data is used, therefore engagement is key for this work. PHAC has engaged with stakeholders and will be reaching out to First Nations, Inuit and Métis (FNIM) groups and the public to inform them of the federal/provincial/territorial (F/P/T) process of co-developing a PCHDS and to seek their input on how health data can serve them better, both during and between public health events.

Informed stakeholder consultations started in summer 2021 and continued into fall 2021. Engagement sessions focused on overcoming the identified root causes impeding the better use of data.

The second phase of public engagement will focus on the public’s needs and perspectives on health data, literacy and trust. Findings will provide insights necessary to build and improve policies and recommendations outlined in the PCHDS.Preparations are also underway for targeted, distinctions-based, regional FNIM engagement activities, with an anticipated launch date of summer 2022.

Expert Advisory Group

A PCHDS Expert Advisory Group (EAG) was established in fall 2020 to provide advice and guidance to inform F/P/T co-development work. Specifically, the EAG provides advice on:
• strategic direction for the use of health systems, population, and public health data to improve the health of Canadians;
• principles to guide the creation, collection, storage, and use of data; and
• a practical and phased roadmap for the implementation of measures to sustainably address areas of greatest opportunity and impact.

The EAG published two reports in 2021. The first report described the systemic barriers to effective health data management while the second report contained recommendations on how to overcome these barriers to optimize the use of data for better health outcomes and more effective public health event management.

The EAG published their third, and final report on May 3, 2022. The third report builds on the recommendations cited in the second report and presents a roadmap of actions for achieving a world-class health data system. In the report, the EAG recommends adopting a person-centric approach to health data that gives patients, and their health care providers, access to health information in an integrated system – leading to better comprehensive care and an integrated health data system that supports robust public health responses. This recommendation is in line with the vision of the PCHDS and the imperative to achieve equitable health outcomes for Canadians.

Indigenous Services Canada (ISC) Health Data Investments

PHAC is working directly with ISC to find alignment and synergies with Indigenous health data initiatives announced in Budget 2021. Access to reliable and culturally relevant data on Indigenous peoples is critical to building a complete portrait of Indigenous lived experiences, unmasking inequalities, and ensuring delivery of effective policies and programs. Engagement on the Pan-Canadian Health Data Strategy will enable alignment with Indigenous-led data strategies, which can further self-determination by providing First Nations, Inuit, and Métis Nation governments and organizations with the data they need to support their communities.

Key Facts
• There are persistent and important gaps in data collection, access, sharing and use that cost lives and 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.
Budget 2022:
Budget 2022 proposes to provide $436.2 million over five years, starting in 2022-23, to the Public Health Agency of Canada to strengthen key surveillance and risk assessment capacities within the Agency. Approximately $7 million of this funding will be used over 3 years to support the implementation of the Pan-Canadian Health Data Strategy (PCHDS). The activities funded through this investment will be used to create two essential governance structures, including their policy, engagement and secretariat capacities, for a Federal Digital Health and Data Council and an FPT Digital Health and Data Council. Funding will also be used for the creation a Health Data Assembly for ongoing consultation with Canadians on the collection, use, and sharing of their health data. In addition, the federal government has committed to work with provinces and territories to ensure that the health care system is underpinned by health data that supports system improvements and Canadians’ access to their own personal health records.