HIV and AIDS: Monitoring

On this page

• Monitoring HIV and AIDS
• Managing and protecting your data
• How Canada reports on HIV
• Current trends (technical reports)

Monitoring HIV and AIDS

HIV and AIDS are both nationally notifiable diseases. That means that the Public Health Agency of Canada (PHAC) collects data on diagnosed cases to monitor national trends, a practice called public health surveillance.

PHAC does not collect personally identifiable information, like your name, contact information or health card numbers.

Information on HIV and AIDS trends helps communities, health care providers and public health departments to:

• understand what the needs are for prevention and healthcare
• gauge the impact of programs and services

This data also helps communities who have an increased burden of HIV to advocate for and get the care, supports and resources they need.

How PHAC gets information on diagnosed cases

Health care providers and labs report cases to their local public health unit and provincial and territorial public health authorities for follow-up. Provinces and territories then voluntarily report cases (without any identifiable information) to PHAC.

Only information from tests done by health care providers to confirm an HIV infection are reported. PHAC doesn't receive information from:

• self-tests done at home
• point-of-care screening tests done at a community organization without seeing a health care provider

Learn more:

• You tested positive for HIV: How does your information get to the Public Health Agency of Canada?

Managing and protecting your data

How we report on trends

Public health surveillance uses data on HIV diagnoses to measure the health of populations and to identify trends. We look at the data from the perspective of groups of people, not individuals.

It's important to recognize that public health surveillance isn't the same as surveillance used by law enforcement, private security and other parties. However, the term can still raise discomfort or have negative meanings for some individuals and communities.

How we protect data

We ensure that data is collected, stored and analyzed appropriately. We collaborate with communities most affected by HIV to make sure that the data:

• is processed accurately and respectfully
• represents populations most affected by HIV

It's important that our reporting doesn't contribute to further challenges or stigma experienced by people living with HIV.

How Canada reports on HIV

Surveillance reports provide information on how many people were diagnosed with HIV in that calendar year.

An HIV diagnosis means you have been diagnosed by a health care provider after you take a test to confirm that you're living with HIV. Some of your information, such as your sex, age, and province or territory, is then sent to the public health agencies that monitor the HIV trends. New HIV diagnoses are reported in the year you're first diagnosed, which may not be the same year you first acquired HIV.

We can also estimate the total number of people living with HIV, both people who know they have HIV and people who don't. We're able to estimate an approximate number using:

• data from specialized lab tests
• surveillance data on new diagnoses
• survey data from the general population and from most affected populations
• mathematical models with assumptions about other relevant factors

This can give us a better understanding of the estimated number of people living with undiagnosed HIV. This information, combined with information about the number of people who have died, and those who have moved in or out of Canada, allows us to estimate the total number of people living with HIV in Canada.

Current trends (technical reports)

Related links

For health professionals

• National case definition: Human immunodeficiency virus
• National case definition: Acquired immune deficiency syndrome