Question Period Note: Pan-canadian health data strategy

N/A

• On November 8, 2022, federal, provincial, and territorial Health Ministers met to discuss the draft co-developed Pan-Canadian Health Data Strategy. The provinces and territories were unwilling to endorse the Strategy, pending further discussions on health transfers to the provinces and territories to support priority work.
• A strong health data foundation, based on federal, provincial, territorial collaboration, is needed to responsibly harness the power of health data to strengthen our public health responses, reduce health inequities, and modernize our health system.
• To achieve this, the Government of Canada is committed to working with the provinces and territories to improve Canada’s collection, protection, access, sharing, and use of health data, and lay the foundation for a world-class health data system.
• The Strategy co-development with provinces and territories was informed by expert advice, with the desired end goal of making it more simple for Canadians to access and use their own data, helping health providers deliver better quality care, and making it easier for data to be used to support critical decisions on improving health systems and public health.

If pressed on the November 8th Health Ministers Meeting
• Our health system is experiencing significant challenges. It’s important that we work together to support improved health data management to achieve better outcomes for Canadians, and to strengthen public health responses.
• There are numerous barriers to achieving a much-needed world-class health data system that can only be addressed through federal, provincial and territorial governments working together. For example, when someone moves from one province or territory to another, they should be able to bring their health data with them, so that their healthcare providers have the information they need to provide the quality of care that everyone in Canada deserves.
• The Government of Canada intensively collaborated with provinces and territories to finalize the draft Pan-Canadian Health Data Strategy and identify common commitments and actions that can advance the use of health data and digital health tools to meet Canadians’ needs.
• We are disappointed by the outcome of the meeting and the statement made by provincial and territorial Premiers. However, our government remains ready to work with provincial and territorial governments to further discuss health priorities, actions and measureable results to improve our health system using health data more effectively.

If pressed on links to health priorities and health data
• The five priorities announced by the Minister of Health in March 2022 included using modern health data and digital health more effectively in Canada. Health data was reiterated as a priority at the November 2022 FPT Health Ministers Meeting.
• Our Government is committed to advancing health priorities, actions and measurable results to improve public health responses and health services for all Canadians.
• Reliable, timely, and relevant health data are crucial to inform decision-making during public health events and drive progress in improving access to care. What is measured matters.
• Our Government remains committed to working with provinces and territories to overcome health data management barriers that slow progress on these priorities, and to improve long-term health benefits for people in Canada.

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 has and will continue to engage with Canadians’ to solicit their views on how health data can serve them better, both during and between public health events.

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 has been considered by the Government of Canada, provinces and territories and our health data partners throughout the co-development of the Pan-Canadian Health Data Strategy.

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 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 the federal government has committed to supporting the Public Health Agency of Canada to strengthen key surveillance and risk assessment capacities.
• 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 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 was 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 would 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.

At the November 8, 2022 FPT Health Ministers Meeting, the Federal and PT Ministers of Health were unwilling to endorse the Strategy. The Federal Minister of Health reiterated the Government of Canada’s commitment to improve health services for all Canadians, including using health data and digital health more effectively.

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. The Government of Canada has engaged with experts and patient advisors during the development of the Strategy. 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. We will continue to ask Canadians for their feedback as we implement the Strategy across the country.

The Government of Canada will also continue to work with First Nations, Inuit and Métis partners, as well as provinces and territories, to support Indigenous data sovereignty by building connections between national and regional Indigenous health data governance and the Strategy.

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 was mandated to provide 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. 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. These recommendations are reflected in the draft PCHDS co-developed with provinces and territories. The EAG’s work has now been completed.

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 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.

• There are persistent and important gaps in data collection, protection, 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.
• The pandemic revealed the critical importance of timely health data. Public health decision-making is impeded when health data are uncoordinated, contain incomplete information, and are not linked across various points of care and across jurisdictions. Ultimately, this negatively impacts the health outcomes of Canadians.
• The draft co-developed Strategy did not envision or create a single large technology system. Rather, it would have facilitated the creation of a new enabling environment where collaborative work in common areas would support the creation of a world-class health data system, enabling Canadians to harness health data to achieve better health outcomes.