Canada’s federal, provincial, territorial, and municipal governments agree that we need to rebuild and improve our health systems. The dream of access to high quality comprehensive effective health systems is alive and well in Canada, but only for the minority.
Today, timely preventative care, barrier-free access to necessary tests, short surgery wait times and after care rehabilitation are not accessible for all. Our two-tier health service leads to lower rates of cancer screening, poorer cancer outcomes, and higher rates of complications from long term illnesses such as high blood pressure and diabetes for lower income and racialized populations. It contributes to the up to 20 years difference in life expectancy between rich and poor in some Canadian cities.
Health service reform must focus on decreasing disparities in illness and life expectancy. Action on the social determinants of health is the most important way to improve population health because it decreases the risk of illness and increases the chance of recovery. But equity in access to and outcome from treatment is also key to improving our population’s health.
Ensuring that any extra funding to health improves the health of those most in need and decreases disparities is the evidence-based and moral choice for our publically funded system. In order to do this we need to collect and use data to help build the right new programs and make sure that they are working effectively.
The Wellesley Institute welcomes reports that the federal government is nearing a deal with provinces and territories to substantially increase health care investments through the Canada Health Transfer (CHT). Public statements have indicated that a key condition attached to the additional funding is a commitment to a national health data system which would seek to improve the ability to access, collect, and share comparable health data across the country. We were very pleased to learn that Ontario is involved in moving this goal forward by agreeing to share data on the province’s health-care systems.
The following eight recommendations will ensure the national health data system and new federal funding for health care advances health equity:
- The federal government should continue to insist on a national health data system in its negotiations with the provinces and territories over the next Canada Health Transfer.
- The national health data system should include race-based and other sociodemographic data.
- Provincial and territorial governments should collect required socio-demographic data in a standardized way that is not onerous to the public or providers such as upon health card renewal.
- A transparent system for data analysis and use to improve the health system should be put in place.
- Wherever appropriate, the data must be made available in a timely manner to researchers and the public, including support to ensure equity deserving communities can access and analyze it.
- The collection and use of data should incorporate modern governance principles such as OCAP and EGAP that promote data quality and the trust of mariginalized populations.
- The development of this system must include appropriate public and stakeholder consultation.
- The Canada Health Transfer should be informed by disparities identified through sociodemographic data and be tied to provincial and territorial health equity plans which have common priorities and targets and are available to the public. The federal government must also put a plan in place.
The COVID-19 pandemic is making clear to everyone in Canada that we must drastically improve our health-care system, including in the delivery of services, equitable virtual care, public health communication, addressing the healthcare workforce shortage, and advancing research. Evidence has long demonstrated inequalities in health for marginalized populations including low income groups, Indigenous groups, people with mental health problems, and racialized groups. The issues intersect; for instance, racial inequities in health care and health outcomes are because of compounding social determinants such as structural racism, poor and inadequate housing, and educational, income, and wealth gaps. This has been further underlined in stark racial disparities in COVID-19 infection, hospitalization, death, vaccination coverage, and treatment.
Collection of race-based and socio-economic data through Public Health Units (PHUs) in Ontario was essential for the work of health system actors and researchers. The data contributed to the creation of City led equity-based COVID-19 efforts which had a stunning impact on infections rates and hospitalizations. Important community-led and government-funded initiatives such as Vaccine Engagement Teams were able to save lives by amplifying public health messaging, addressing vaccine hesitancy, and providing education and resources to higher risk populations through trained community members.
While Ontario currently mandates the collection of standardized race-based data through the Anti-Racism Act for some public sector organizations (PSOs), including child and youth services, education, and correctional services, it does not mandate providers of health services, including PHUs, to collect race-based data. Specific guidance and standards for its collection and use should be selected and put in place. Integrated and comparable data will promote health equity in communities and the general population by driving better care delivery and leading to more equitable outcomes for those in Ontario.
In Ontario, some demographic information such as gender, age, and area of residence has long been collected through the OHIP issuance and renewal process. As referenced above, earlier in the pandemic this was expanded and that expansion should be made permanent, including race, ethnicity, language, gender, and other important demographic factors influencing health outcomes. Some other provinces are making progress on this, including Nova Scotia through its Fair Care Project, a new initiative that aims to improve data collection for better care. Putting this information on provincial health cards will ensure the system can be better managed by reducing the administrative burden on frontline staff, allowing for more meaningful use of provincial and new federal data systems. It will also decrease the amount of unnecessary red tape for patients and health care providers who are already doing the right thing and requesting this information.
But data collection or the presence of socio-demographic data is not an end in itself. Data must be analyzed and used to improve equity, meaning mechanisms must be put in place to enable and ensure the transparent and timely analysis and application of data. While existing central groups like Statistics Canada and CIHI may be able to ramp up and develop their capacity to perform meaningful equity analyses, these data should also be made available to universities and communities. Stakeholder organizations in equity deserving communities should be supported in accessing and analyzing data so that they can help identify and investigate local inequalities and track progress towards equity.
The presence of detailed socio-demographic health data may raise understandable concerns over data privacy and use, particularly among racialized communities. Race-based data has previously been used in ways that some populations have found stigmatizing. There are two prominent guiding frameworks that should be integrated in health data collection, and use to address these concerns. The first is the First Nations principles of ownership, control, access, and possession (OCAP), a set of principles that reflect nation to nation commitments to collect, use, and share data and information in a way that benefits First Nations communities while minimizing harm and ensuring community ownership. The second is the Black Health Equity Working Group’s “Engagement, Governance, Access, and Protection” (EGAP) framework, which aims to ensure better governance in data collection and use so that communities are properly included in discussions about their data and there are proper protections in place to ensure it is used to their benefit. Federal, provincial, and territorial governments should work together to ensure all affected communities are consulted on how these can be implemented.
To ensure that service, program, or policy changes do not lead to worsening health disparities for health populations, the national health data system would enable better use of Health Equity Impact Assessments (HEIAs). As the Wellesley Institute has previously called for, the federal government should enact government-wide and departmental health equity plans. Provincial governments need to do the same. An additional requirement for the new CHT should be health equity plans from each province, with specific areas agreed upon and required. Any province unwilling to take this step should not receive additional funding. The public in each province deserves to have publicly accessible plans to achieve health equity to hold political leaders accountable.
Finally, the governments also have an obligation to ensure those living in Canada are able to move freely from province to province. This is an economic benefit, an important leadership role we have the right to expect from our national government, and is an opportunity to make s.6 of the Charter of Rights of Freedoms, guaranteeing freedom of movement, real. Having, or having a family member living with a disability or other health-care system needs, must not be an obstacle to moving from province to province. Putting in place these measurements would be a first step to national transparency, enabling families to make informed decisions before moving, and push lagging jurisdictions to improve. Further, Indigenous, Black, and other racialized persons have a right to know whether an inter-provincial move may exacerbate the health inequities they face at their current place of residence.
The creation of a national health data system has the potential to accelerate Ontario—and the rest of the country’s—progress towards improving our health systems and advancing health equity. By delivering an amended Canada Health Transfer that includes a national health data system with both standardized and accessible sociodemographic data as well as federal, provincial, and territorial health equity plans, our leaders can ensure a stronger, fairer, more efficient health system that works on behalf of everyone living in Canada.