Structural inequality in Canada’s healthcare system, and how better data collection can help

All around the world, people of all colours are gathering to deliver an unmistakable, unified message: enough is enough. 

The recent deaths of George Floyd and Breonna Taylor in the United States, while profoundly tragic in isolation, are part of the everyday horrors that have tipped the greater scales of frustrations around systemic racism. Civilians have not taken to the streets to protest the death of one Black man, one Black woman, or one incident of racism. They’re protesting a system that shoots them in the foot, and then punishes them for being disadvantaged. A system that leads to greater rates of incarceration, abuse, illness, and loss of life for all minorities. 

The causes stem from an ugly societal blemish — racism. Atrocities committed against people of colour took place not so long ago in a historical context. The reverberations, and societal flinching points, are still apparent in the way people of colour are treated in nearly every circumstance. 

While the United States and Canada differ in many ways, we share a bleak history of systemic racism. In Canada, minorities such as Black and Indigenous people are among society’s working poor. And even though we have universal healthcare, access to and the effectiveness of said healthcare is not universal across races and ethnicities. 

In pandemic times, a spotlight is placed on the structural weakness in our social programs. Canadian minorities have been disproportionately affected by COVID-19. In many cases, they can’t avoid the virus because of job insecurity, reliance on public transit, living in multi-person housing, or residing in neighbourhoods with restricted healthcare options. 

Without a solid, data-backed plan to alleviate these structural imbalances, meaningful change is not likely to occur in the near future. It won’t be easy, but it’s necessary. 

The importance of healthcare data

What can be done to improve access to healthcare for all people? A concerted data gathering effort is one place to start. 

Data has been called “The new oil” — it’s extremely valuable to every modern organization. In the retail industry, both online and brick and mortar stores use data to their advantage. A restaurant might order more patio umbrellas if weather data suggests this summer will be a sunny one. Online retailers use data-driven targeting to show ads that match your unique tastes. Of course, these strategies also boost profits for businesses across the board. 

Data is powerful. With enough data, we can predict business outcomes down to a fraction of a percentage point. So why isn’t data being leveraged to save lives, the same way it is to save dollars?

If our healthcare system is to be truly universal, it must take into account the people who need comprehensive care the most. There are two types of healthcare data: individual patient data, and system-wide data. 

Individual patient data helps provide continuity of care to ensure you get proper, personalized treatment that builds on past work. System-wide data can be used to see trends among patient groupings. Small amounts of data from many patients are pooled so researchers and doctors can look for patterns in the data, helping them develop new ways of predicting or diagnosing illness, and identify ways to improve clinical care.

System-wide patient data can help:

• Understand more about disease risks and causes.
• Improve diagnosis.
• Develop new treatments and prevent disease.
• Plan services across our healthcare system.
• Improve patient safety.
• Evaluate government and medicare policy.

If we don’t have healthcare data on minorities, we won’t know the ways in which we’re failing them. We can’t change what we haven’t properly identified. 

According to Angela Robertson, Executive Director of the Parkdale Queen West Community Health Centre in Toronto, “We in Canada have been glacial in our movement in the collection of race-based data in our health-care system. As a result we will not be able to identify the disproportional access challenges, deaths, illnesses that Black communities will experience as a result of COVID-19… My fear is that the real health impact on [the] Black community will be hidden.” 

Race versus ethnicity

We can’t just look at inequality of healthcare in terms of skin colour. Recent studies have shown that there is more genetic variation within races than between races. Therefore, race is of limited biological significance when creating a patient’s care plan. 

In other words, minorities don’t suffer from worse health outcomes because they’re genetically predisposed to be less healthy. Ethnicity, as well as socioeconomic status, are much more important data points than someone’s race. 

Race and ethnicity are often conflated, but there are very important differences. Race is used to categorize people based on perceived physical differences like skin colour and facial features. Ethnicity is a multi-dimensional concept referring to membership in a cultural group. It is often connected to socio-demographic characteristics including language, religious affiliation, nationality, cultural traditions and migration history, among others.

For example, a man from Mexico might consider himself Latino, but there are many other countries that self-reported Latinos hail from. Within countries there can be great genetic diversity among Indigenous people, migrants, long-time inhabitants, and people from different regions of that country. 

Race and ethnicity are very much intertwined due to systemic racism that leads to lowered socioeconomic status for people of colour. Oftentimes, when socioeconomic factors are accounted for, differences in health outcomes between races vanish. 

One of the strongest factors in poor health is financial status. Households that live in poverty are more prone to existential stress about whether they’ll be able to afford the basics. When someone becomes ill, that household’s earning power goes down even more. Without financial resources, it’s difficult or impossible to take time off work to seek healthcare. This begins a vicious cycle of illness and poverty. 

Socioeconomic factors

In Canada, we have what’s known as the racial wage gap. Canadian-born minorities tend to earn less than their caucasian peers, even when education levels are equal. This is even more exacerbated for minority females, who face a gender wage gap as well. In Canada, as of 2016, black women earned 59 cents for every dollar a white man earned. 

Poverty is one of the greatest determinants of status, mobility, judicial freedom, and health. Poverty also prevents minorities from being able to fully integrate into Canadian society, which creates alienation, marginalization, and vulnerability. 

In almost all countries, the poorest people are most at risk of developing chronic diseases and dying prematurely from them. Financially unstable people are more vulnerable for several reasons, including increased exposure to risks and decreased access to health services. This feeds into a cycle of poverty, illness, decreased household earning power, and increased stress which exacerbates illness.

An environment of systemic racism means that minorities face barriers to equal treatment at every turn. This seeps into their experience in the healthcare system on a multitude of levels. 

• Minorities tend to receive testing at lower rates for serious diseases such as cancer, or COVID-19, than other racial groups.
• Living in neighbourhoods that lack adequate access to healthcare. Residents may have to take public transit where they face increased exposure to disease.
• Working in jobs that have lower pay and don’t permit working from home, physical distancing, or paid sick days.
• Criminalization that limits the use of face masks when in stores.
• Racial discrimination in healthcare, such as denying pain medication due to racist skepticism.
• Language barriers when receiving treatment.
• Conveying information and receiving informed consent. 
• Delivery of culturally sensitive care. 

Why are we not collecting racial, ethnic, or socioeconomic data, and what is it costing us?

Canada has a reputation for being progressive, but we lag behind other countries in terms of racial data collection. So much so that the United Nations has directly reprimanded our lack of insight into the ethnic makeup of our population. Speculation as to why we’re trailing centres around our national discomfort with difficult conversations. Our desire to be sensitive, especially in light of historical injustices against Chinese, Japanese, and Indigenous people on Canadian soil, means that we avoid asking questions about race when it would be relevant and helpful.  

The problem is, we don’t know what we don’t know. If we’re missing out on pertinent racial and ethnic data, we have no idea of problems in our society other than through anecdotal evidence. When structural imbalances continue, and certain groups perpetually find themselves on the losing side, they have to speak up forcefully to finally be heard. 

Without racial and ethnic data, we don’t know where the problems lie in our healthcare system, and which groups are suffering. The contributions we do make to these causes amount to nothing more than tokenism without a strategic, data-backed plan to infuse money and resources into the areas that need them most. 

According to Joe Hester, executive director of Anishnawbe Health Toronto, “Most government health programmes are geared toward the rural reserves, where our people traditionally lived. But large-scale health services, tailored for our cultural needs, are needed in the cities, where we mostly live now.”

A lack of data also stunts healthcare efficacy on a completely biological basis. American and British data show that Black women have a higher risk of developing aggressive breast cancer. Similar racial data isn’t captured in Canada, which just goes to show the blind spots in our system. This leads to reduced screenings, and cancer that is diagnosed at later, more dangerous stages. 

In order to create truly effective policies, invest in the right healthcare programs, and be strategic with our community outreach, we need data to tell us where the country is hurting. As long as Canada continues to skirt around the topic of race and ethnicity for medical contexts, we’re trading life saving intervention for politeness. 

How can we improve data collection methods?

While COVID-19 has wreaked havoc on Canada’s neighbourhoods and economy, we shouldn’t let this pandemic pass without utilizing the many learning opportunities it’s presented. We’ve seen the virus disproportionately impact minority communities. Here’s how we can curb that trend in the future. 

1. Normalize data collection around race and socioeconomic factors when performing patient intake for all types of medical incidents, but especially for widespread viruses like COVID-19. Questions around income, housing status, health insurance status, and type of employment are all relevant when creating personalized patient care plans.
2. Standardize the intake questions used to gain racial, ethnic, and socioeconomic data. Data must be uniformly mined to be accurately compared by analysts.
3. Provide clarification to patients when asking them about race or socioeconomic data. They may be uncomfortable as to why these questions are being asked. Or, concerned that these questions may reinforce false stereotypes.
4. Organizations that are collecting data should be transparent and collaborative. Have an open dialogue with local community leaders, particularly in Indigenous and Black communities. Be willing to share collected data with these communities to help them distribute the best possible information and care to their people.

Quality healthcare should be a basic human right, regardless of the colour of your skin, the area you were raised in, your financial status, or your cultural history. If we don’t collect adequate data to protect the health of the most vulnerable in our society, we’ve chosen the path of willful ignorance.

As the Black Lives Matter protests continue, we must remember that it takes the work of all parties to create a society that enables everyone to fulfill their potential, and to enjoy basic health and security. In Canada, we take pride in our diverse communities. Now let’s take pride in how we proactively look out for them.