When we hear the term "demographics," we often think of simple traits like age, gender, or where someone lives. However, demographics include much more. Demography refers to the social, cultural, and personal characteristics that make up an individual. This can include a range of factors such as race, spoken languages, income, religion, or marital status.
When these personal traits are collected to create a bigger picture of a group, community, or population, it becomes demographic data collection. A common example is the Canadian Census, which takes place every five years. But demographic information can also be gathered in other settings, such as hospitals, clinics, or doctors' offices. When patients fill out intake forms, they may be asked to include demographic information. This is known as self-reported data collection, and this information can be used to understand the needs and challenges of different populations, and address gaps in health equity.
Why Demographics Are Crucial for Healthcare
Currently, the scope of demographic health data in Canada is often limited to age and sex. This limited data means that many crucial details—such as income, race, or other social elements—are not being collected.
Research in Canada has shown that economic and social factors such as income, race and where a person lives, often have a bigger impact on a person’s health than lifestyle choices like diet or exercise. This highlights the importance of collecting demographic data beyond age and sex to better understand health inequities. Without this data, we can’t measure which groups are at a higher risk for poor health outcomes. Data provides evidence to support meaningful and needed change.
Harm and Skepticism in Race-Based and Ethnicity Data Collection
The Canadian Institute for Health Information (CIHI), which plays a significant role in health data collection, stresses that when race-based and ethnicity data is collected, it should be used to drive real changes that reduce unfair differences in healthcare access and outcomes. While demographic data collection is essential for improving healthcare equity, it might understandably raise concerns for some particularly due to privacy concerns. But it is important to know that in healthcare settings, patients must consent to how their personal data is used.
It’s normal to be curious, or even a bit skeptical about why a healthcare provider wants to collect your personal information. This is especially true for patients who have experienced negative interactions with the healthcare system, such as misdiagnosis, maltreatment, or discrimination. In fact, there are potential harms to consider in the collection of race-based and ethnicity data. For example, the Black Health Equity Working Group has highlighted concerns from Black communities about past and ongoing use of their data without meaningful benefits being returned to them. Indigenous Peoples in Canada have also faced a long history of discrimination in the medical system This legacy and ongoing discrimination demands intentional training, trust-building, and community engagement to ensure that demographic data is used ethically and with respect for those who have historically been, and continue to be, marginalized.
CIHI Standards on Data Collection
To ensure that race and ethnicity-based data collection is beneficial rather than harmful, CIHI has developed specific standards around this type of data. These guidelines help address potential risks while maximizing the benefits of gathering this information.
One of the key practices that CIHI promotes is data governance, especially when collecting data on Indigenous identity. Data governance refers to the right of communities to control how their data is collected and how it is then managed and used to drive positive change within the community. Every community should have the right to control and govern their data: Indigenous Peoples, Black communities, and other marginalized groups should have the right to their data and be able to govern their own data to ensure it is used in ways that reflect their needs and priorities.
All communities must be able to determine what data is being collected, who can access it, and how it will be applied. This approach not only builds community support, but also encourages greater participation in data collection and improves the quality of the data gathered which can lead to much-needed policies that address systemic inequities.
Receive updates by email 
