Glossary 
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In Quebec, the terms “health and social services information” or, more simply, “health data”, are used to describe personal information relating to an individual's physical or mental health status, or their care trajectory within the healthcare system.
What Is Health Data?
What Is Health Data?
Health data may include, for example:
- A physician's note following a consultation;
- A laboratory test result;
- Images obtained through X-rays or other medical imaging procedures;
- A diagnosis or treatment when associated with a person's name or health insurance number.
Why Is Health Data Used in Research?
Why Is Health Data Used in Research?
Health data are frequently collected and used in research projects. Their use contributes to advancing knowledge and improving healthcare for the benefit of the entire population.
By analyzing health data, research teams can:
- Identify causes and trends to better understand diseases;
- Discover new medications and innovative therapies that improve quality of life;
- Better understand treatment effects among participants in order to tailor medical interventions more effectively;
- Develop recommendations to optimize the use of resources within our healthcare system.
To protect the health data of individuals concerned, research projects must comply with strict requirements regarding confidentiality, security, and ethics.
How Is Health Data Collected for Research?
Research projects may rely on data obtained with or without consent. Each situation is governed by specific rules regarding access to and use of the data.
Data obtained with consent
In clinical research, the vast majority of data are used with the participant's consent. In other words, the participant agrees that the data collected may be used by the research team to answer the research questions defined in the study.
The research protocol and the participant's informed consent form describe all data to be collected, the methods and duration of data retention, and the ways in which the investigator and research team may use the information.
Data obtained without consent
Unlike data obtained with consent, some research projects may use health data for research purposes without first obtaining the consent of the individuals concerned. These are referred to as data obtained without consent.
How Is Health Data Protected?
Research projects that collect and use health data, whether obtained with or without consent, must be reviewed and approved by a Research Ethics Board (REB). The REB's mission is to protect the safety and well-being of participants and to ensure that research is conducted in accordance with applicable scientific and ethical principles. These principles require researchers to properly safeguard the data collected and use them for the benefit of participants and society as a whole.
In addition, Quebec legislation establishes measures to ensure data security and privacy protection. For example, certain projects must undergo a Privacy Impact Assessment (PIA). A PIA is a preliminary process designed to ensure that a research project adequately protects health data.
Private-sector researchers seeking access to and use of health data for research purposes, without the consent of the individuals concerned, must also apply through a centralized access point known as the Research Access Centre (RAC). The RAC coordinates and oversees access requests submitted by private-sector researchers. It ensures that all required access conditions and ethics approvals have been obtained and takes the necessary measures to maintain the highest recognized standards for the protection of personal information.
De-identification and Anonymization: Two Essential Processes
Several methods can be used to protect participants' privacy and the confidentiality of their data, including de-identification and anonymization techniques.
De-identifying health data
This is the process of removing information that can directly identify an individual. For example, a researcher may have access to a participant's diagnosis and treatment information without knowing the participant's identity. However, de-identified data may still allow indirect identification under certain circumstances. For example, a hospital may retain a code that can link de-identified data back to the individual concerned.
Anonymizing health data
It provides an even higher level of privacy protection. When a participant's health data are anonymized, it becomes impossible to identify the individual, either directly or indirectly, on a permanent basis. For example, a diagnosis or treatment could no longer be linked to the participant's identity.
Examples of Health Data Use to Improve Healthcare
Learn More About Health Data
Visit the Government of Quebec Health Information Portal or learn more about the rights of Patients, research participants, and citizens.
On this page
- Definition
- Use of Health Data in Research
- Collection of Health Data in Research
- Health Data Protection
- De-identification and Anonymization of Health Data
- Examples of Health Data Used to Improve Healthcare
- Government of Quebec Health Information Portal
- Rights of Patients, Research Participants, and Citizens
- Glossary
