Working with partners to modernize public health data
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Importance of public health data
COVID-19 and other recent health events have highlighted the importance and challenges of collecting, sharing, accessing and using health data to benefit people in Canada. Public health officials need reliable, timely and relevant health data so they can provide their best advice about public health events and issues.
While we do currently collect and share health data for public health purposes, there are areas for improvement. Persistent data gaps undermine health decision-making at the personal, professional and system-wide levels. They can impair public health responses, reduce health outcomes, and contribute to health inequities.
What has been done so far
In 2020, the Pan-Canadian Expert Advisory Group (EAG) was formed to make recommendations on systemic problems with the collection, sharing and use of health data in Canada. The work of the EAG concluded once the third report was published in May 2022.
The EAG released 3 reports that:
- drew attention to the foundations of Canada's health data
- provided advice for developing a person-centred health data system
- highlighted the need for coordinated actions in:
- policy
- public trust
- governance
- data literacy
- interoperability (the ability of different types of technologies to work well together)
Building on the advice of the EAG, there was significant collaboration towards a pan-Canadian health data strategy. This work focused on areas where more collaboration is needed, such as:
- building public trust
- developing policies and governance
- modernizing and aligning health data standards
This work set the stage for a new era of collaboration under the Working Together to Improve Health Care for Canadians plan. This plan was announced on February 7, 2023. Through this plan the Government of Canada is funding nearly $200 billion over 10 years to improve health services in Canada. This includes $25 billion in targeted bilateral funding for provinces and territories for 4 shared health priorities:
- expanding access to family health services, including in rural and remote areas
- supporting our health workers and reducing backlogs
- improving access to quality mental health and substance use services
- modernizing the health system with standardized health data and digital tools
Under the Working Together plan, governments commit to improving how health data is collected, shared, used and reported to:
- manage public health emergencies
- improve people's access to their own health data
- support greater transparency on the results of health care improvements
The commitments under the joint federal, provincial and territorial (FPT) Action Plan on Health Data and Digital Health were announced in October 2023:
- to collect and share high-quality and comparable depersonalized information to measure progress on common healthcare indicators
- to collect and share public health data to support Canada's preparedness and response to public health events
- to adopt common interoperability standards guided by the Pan-Canadian Interoperability Roadmap to:
- better connect health care systems
- allow people and health care providers to securely access electronic health information
- to promote alignment of provincial and territorial health data policies and legislative frameworks for consistent approaches to health data management and stewardship with appropriate privacy protections
- to advance common principles for managing health data by endorsing the Pan-Canadian Health Data Charter, which reaffirms a person-centered, ethical approach to:
- equity
- health data
- public engagement
- Indigenous data sovereignty
Taken together, this work builds on collaboration across FPT partners in recent years. It also reflects the advice received from experts and other stakeholders.
Developments and advice from these collective efforts have been incorporated into the:
- Working Together plan
- Joint FPT Action Plan on Health Data and Digital Health
- Pan-Canadian Health Data Charter
These tools will guide FPT collective action towards a shared vision for health data in Canada.
Next steps
Together with FPT health data partners, we're continuing to work towards a better-connected health system with standardized health data and digital tools. We're providing national leadership on the collection, assessment, and integration of health data for public health purposes. This work will help the public health system to deliver on the needs and expectations of people across Canada.
A range of activities support these critical areas and priorities, including some activities aimed at modernizing the public health data system. For example:
- We're undertaking public opinion research to better understand levels of health data literacy and values about health data sharing in Canada. This work will provide insights to inform policies, processes and practices for optimizing health data sharing.
- The Public Health Data Steering Committee (PHDSC), launched in spring 2023, is delivering on the Joint FPT Action Plan items, in collaboration with the Digital Health and Health Data Priorities Table. It also provides a forum for FPT partners to drive progress on using health data to address public health challenges.
- We launched Vision 2030, an innovative vision of what public health surveillance should look like by 2030 in Canada. This work reflects diverse voices, including the public, academics, Indigenous people and communities, and public health professionals.
- Having the right information at the right time is vital to addressing public health events in a timely and effective manner. FPT governments are working together to modernize public health information sharing.
These collective and complementary efforts across FPT partners will improve the collection, standardization and use of health data while respecting and protecting privacy. These efforts will help public health agencies have the data they need to prepare for and respond to public health events in an increasingly complex world.
Additional resources
- Public Trust, Literacy and Health Data Foundations in Canada: A Foundational Paper - Health Data Research Network Canada
- Online course: Your Health, Your Data: Understanding Health Data in Canada - Canadian Health Information Management Association
- Public Engagement Toolkit - Simon Fraser University