Lesson 1: Health Data and Information Introduction
Learning Objectives
| Discover the stages of the health data and information lifecycle |
| Understand what health data and information are with real-world examples that illustrate how health data and information is collected, stored, and utilized to improve care |
Definitions
Data
Data are facts, figures, observations, or recordings that can take the form of image, sound, text or physical measurements (Statistics Canada, 2021).
Health Data
This is a group of observations, facts, or measurements that can be studied later. It includes information about people’s physical and mental health, how well the health system is working, and details about the community, like gender, education, income levels and other social factors. This helps experts understand health trends and make better decisions for improving health care (adapted from Health Data Research Network [HDRN], 2025).
Health Information
This type of information includes details about a person’s health and medical history. It includes things like their health problems, any diseases they have, treatments they’ve received, and medications they take (adapted from HDRN, 2025).
Population Health Information
Population health focuses on making everyone healthier and reducing differences in health between different groups of people.
What is the Difference Between Data and Information?
Data refers to the basic elements that are collected, which are the building blocks of information. We collect and analyze data to learn new things and draw conclusions. When meaning and context are added to data, it becomes information, which can be used to help us make better decisions.
Personal Health Information Example: Your primary care provider orders blood work for you and compares the results to your previous test results. They note a steady increase in your blood sugar levels and explain this can mean you are at risk of developing diabetes. Your provider recommends some diet and exercise changes and will continue to monitor your blood sugar in the coming months.
Population Health Information Example: The number of flu cases reported in a city over a week is 500. When this data is compared to previous years or analyzed against seasonal trends, it might show that the flu cases are significantly higher than average, signaling the start of an outbreak. Public health officials could use this information to implement preventive measures, like vaccination campaigns or public advisories.
In this case, the health data, flu cases, become health information when analyzed and combined with other data to help guide public health decisions and responses (Public Health Agency of Canada [PHAC], 2025).
What is Digital Health and Digital Health Data?
Digital health refers to electronic health record systems that track your visits and experiences with health care. Data from these systems can be shared quickly and safely with other care providers in your care team, making care and communication safer and more efficient (adapted from HDRN, 2025).
The use of digital health technologies varies across Canada. For instance, while many health care organizations use electronic systems, others still use a combination of electronic and paper-based tools.
Digital health data refers to health-related data that is collected, stored, and transmitted in a digital format. This can include a variety of health-related data that is captured through digital tools and technologies. It is often used to monitor, track, and manage an individual’s or populations health or to support broader health care systems and research.
What is Indigenous Data Sovereignty?
In Canada, Indigenous Peoples refers to First Nations, Inuit, and Métis – the original inhabitants and descendants of the land that is now Canada. Each group is distinct with unique histories, languages, cultural practices, and legal identities.
Indigenous data encompasses data related to Indigenous People, their communities, and their relationships with the natural world. This includes data about individuals (such as demographics and health), community (such as cultural practices and languages), and non-human relations (such as management of land, ecosystems, and wildlife).
Indigenous data sovereignty means that Indigenous Peoples have the right to own, control, access, and steward data about their communities, lands and culture. Information management and data collection strategies must align with the practises and culture of the Indigenous communities who are represented in the data. Data sovereignty also means that individuals from Indigenous communities are partners in the research process rather than subjects.
In short, Indigenous data sovereignty means that Indigenous Peoples own, control, and manage data about their people, land, and culture. Data collection and management should reflect the practices and values of the Indigenous communities represented in the data. It also means that Indigenous communities are partners in research, not just subjects of it (Simon Fraser University [SFU], 2024).
What is the Health Data Lifecycle?
The health data lifecycle is a process that shows how health data is collected, used, and protected in Canada. This helps health care providers and health data users to understand health better and improve care for everyone.
Here’s a simple breakdown of the steps in this process. Each of these steps is explained in more detail in upcoming lessons.
Collection: Health data are gathered from various places, like hospitals, clinics, and surveys. This includes data about patients’ health conditions, treatments they receive, medications they take, and their overall health history.
Use: Health care providers use this data to help patients. They look at the data to understand health trends, make better treatment decisions, and provide personalized care. Researchers and health organizations also use the data to study health issues and find new ways to improve health services.
Access & Storage: Once collected, the data are stored safely and maintained in health records. This ensures that the data are organized and can be found easily when needed. Secure storage is important to protect people’s privacy.
Privacy & Security: Protecting data is very important. There are rules, legislation, and laws to keep it private. Only authorized people, like health care providers and health officials, should be able to access it. This helps keep patients’ personal information safe.
Sharing: Sometimes, health data are shared with other health care providers and other users. This sharing helps everyone work together to improve care.
Health care organizations regularly review this process to ensure it works well. This means checking how data are collected, stored, and used, and making improvements where needed, and securely disposing of it when it is no longer needed. Regular reviews help keep the system effective and responsive to the community’s health needs.
What are the Types of Health Information?
| Type | Description | Use | Example |
| Clinical Data | Clinical Data encompass a wide range of health-related data collected about individuals, which health care providers use to deliver care effectively. They include: * Diagnoses (what health issues a person has) * Treatments (how those issues are addressed) * Medications (what medicines are prescribed) * Lab results (test results that were ordered) * Administrative documents *Other notes, forms, reports, x-rays, and pictures | Use: Health care providers use these records to make informed decisions about care, track how patients are doing, and ensure they get the right treatment over time. | Example: Medical records: A patient’s medical record includes their medical history, medications, allergies, and test results. These records may be stored in paper, electronically, or a combination of both. |
| Administrative Data | Health care Administrative Data are collections of data that track various aspects of health services and patient care. These data include records about hospital visits, treatments received, billing information, and patient demographics, such as age and gender. They are used by health care providers, government agencies, and researchers to understand how health care is being used, to improve services, and to make decisions about health policies. Wherever possible, this data has all identifying elements removed to maintain patient privacy (this is called “de-identified data”). | Use: This data helps track how many people go to the hospital, understand health care use, and watch for health trends. | Example: Collections of data about appointments, visits, billing details, and health insurance claims. |
| Research Data | Research data refers to the findings gathered during studies aimed at understanding health issues, treatments, and patient outcomes. This data often requires patient consent for use, and helps researchers learn more about diseases, how effective different treatments are, and ways to improve patient care. It can come from various sources, including surveys, clinical trials, and medical records. | Use: This helps improve our knowledge of health and diseases and supports new treatments and medicines. | Example: Clinical trials are studies that test new medicines or treatments to see if they work and are safe. |
| Public Health Data | Public Health data helps communities understand and improve health. This includes data about diseases, health risks, vaccination programs, and healthy living practices. Public health information is shared by health departments and organizations to educate people about staying healthy and preventing illness. It helps communities respond to and prepare for health emergencies, like outbreaks of disease, and promotes awareness about important health issues. | Use: This helps monitor the health of Canadians, find health gaps, and shape public health policies tailored for the needs of diverse population groups. | Example: Population Health Surveys such as the Canadian Community Health Survey (CCHS) gathers data about people’s health, habits, access to health care, and social factors (Statistics Canada, 2025). |
| Genomic Data | Genomic data relates to a person’s genes, which are the tiny parts of our DNA that determine our traits, like eye color or height. This data helps scientists understand how our bodies work and how we might respond to certain diseases or treatments. By studying genomic data, researchers can learn about health risks and find better ways to prevent or treat illnesses. It plays an important role in personalized medicine, where health care providers can tailor treatments based on an individual’s unique genetic makeup. | Use: Researchers use this data to understand diseases, create personalized medicine, and find people at risk for certain health issues. | Example: Genetic data includes DNA and how genes work in the body. |
| Environmental Data | Environmental Data Environmental data helps us understand how our surroundings affect our health. This includes data about air and water quality, pollution, chemicals, and other factors in our environment that can impact our well-being. By studying this data, scientists and health officials can identify risks, such as harmful substances in the air we breathe or in the food we eat. They use this knowledge to create guidelines and policies that help keep our communities safe and healthy. | Use: This data helps understand how the environment affects health, spot hazards, and make public health plans. | Example: During forest fires, health care and public health officials can monitor the air quality to provide warnings. |
| Determinants of Health | Determinants of Health are factors in our everyday lives that affect our health and well-being. These include things like where we live, our income, education, and access to health care. For example, people who live in safe neighbourhoods with good schools and health care facilities tend to be healthier. This data helps us understand that health is not just about medical care; it’s also influenced by social, political, and economic conditions. By recognizing these factors, communities can work to improve living conditions and support healthier lifestyles for everyone. | Use: This helps understand social factors that affect health and create solutions for health gaps. | Example: Data on income, education, housing, and employment. |
| Personal Device Data | Gadgets like fitness trackers, smartwatches, and other connected devices can monitor things like heart rate, steps taken, sleep patterns, and even blood pressure. When patients use these devices, they collect important health data that can be shared with health care providers. This helps health care providers get a clearer picture of a patient’s daily health and activity levels. | Use: This data helps monitor health, encourage healthy habits, and tailor health care to individuals. | Example: A patient regularly uses their Apple Watch to record their activity. When shared with health care providers, it helps them understand patients’ health better, and to provide recommendations for improvements. |
Journey Video: Health Data Use
In this video, you’ll learn how health information is used to give you the best care and how this data helps with planning and improving services in your community. Discover the important role health data plays in keeping everyone healthy!
How is Equity, Diversity, and Inclusion Considered in Health Data?
Equity, diversity, and inclusion considerations of health data can be addressed in several ways:
| Collecting Diverse Data | Health organizations gather data about different groups of people, including their ethnicity, cultures, and health needs. This helps them understand how to serve everyone better. |
| Culturally Relevant Data | Health data is made available in different languages and formats so that people from various cultures can understand it easily. |
| Training Staff | Health care workers receive training on the importance of equity and inclusion, as well as delivering culturally relevant care. This helps them treat all patients with respect and understanding. |
| Community Input | Health organizations ask communities for their input when creating health programs. This ensures that the programs meet the specific needs of different groups. |
| Addressing Health Gaps | Efforts are made to identify and fix gaps in health data that affect underserved communities. This helps improve health for everyone. |
Journey Video: Primary Specialist Care
Follow the story of a 2SLGBTQI+ individual to see how health data helps create safe spaces and improve services. Learn how this data makes sure everyone’s needs are met and promotes fairness in health care and see how data can make a difference!
The course was developed in collaboration with the Public Health Agency of Canada.