Public FAQ

Health data are information about the health and wellbeing of populations or groups of people. These may include information about:

• Use of health care services (e.g., visiting the Emergency Room, making an appointment with a health care professional or filling a prescription)
• Risk factors (e.g., diet, exercise, smoking or alcohol consumption)
• Sex and gender, geographic area, social services use, education level, income, immigration status and other structural determinants of health that impact individuals’ and communities’ health and wellbeing

Health Data Research Network Canada (HDRN Canada) is a network of provincial, territorial and national data centres that are working together to make it easier for researchers to use health and health-related data from multiple provinces and territories in research studies.

By increasing researchers’ access to data from multiple provinces and/or territories, HDRN Canada aims to improve the quantity and quality of studies on health-related issues that affect all of us, such as hospital wait times, chronic illnesses, mental health, disease prevention, and more. HDRN Canada supports research that helps us understand health challenges across Canada as well as possible solutions.

Each provincial, territorial and pan-Canadian data centre or data site has a different process for researchers to request access to data. As a result, Canadian policymakers have limited ability to learn from the experiences in different provinces and territories. We need multi-regional and pan-Canadian data to perform rigorous studies so that we can determine what is working in our health systems and what needs improvement.

Administrative and clinical data are available through HDRN Canada’s Data Access Support Hub (DASH), including:

• Records of health services provided by physicians, nurses and other health care professionals
• Drug prescriptions, health registries (e.g., Vital Statistics, cancer rates)
• Some data from primary care electronic medical records (e.g., weight, blood pressure, lab test results)

Many of our Member Organizations also have some health-related data, such as information about sex, geographic area of residence, social services use, education level, income, immigration status and other social determinants of health that impact the health and wellbeing of all Canadians. Learn which datasets are accessible to researchers through the DASH Data Assets Inventory.

No. The data that are available for research do not include any information that could be used to directly identify you. Datasets accessible through the Data Access Support Hub (DASH) have no names, no addresses, no health card numbers and generally do not include full dates of birth. Researchers must sign binding agreements stating that they will not attempt to re-identify individuals.

No. The datasets that HDRN Canada Member Organizations work with do not include identifying information, and local data centres do not have the ability to identify you. Data that could directly identify you (e.g., name, date of birth, health card number, etc.) are separated from the data available to researchers and stored separately. Your local data centre cannot look up information about you or provide you with your own data. If you want to access your own health data, please contact your local data centre. Depending on the rules and processes of your province or territory, they may be able to put you in touch with one or more individual data providers (e.g., Ministry of Health).

Each data centre has strict policies and requirements with regard to maintaining the confidentiality and security of data, including physical security controls, secure data facilities and data encryption. Data centres must comply with provincial and federal privacy legislation. Researchers enter into agreements with data centres and commit to the appropriate use and safeguarding of the data, which are de-identified before the data centre makes them available to the researcher.

Data centres that are part of HDRN Canada have different policies about if and how the private sector can work with de-identified health data for approved research projects. The ability for your data to be used for commercial purposes varies by province and/or territory. Commercial entities must meet local eligibility criteria in order to access data.

No. Access to data will enable researchers to better understand the many factors and variables that impact the health of different populations, or groups of people. They can compare data between different provinces and territories and gather evidence that shows which treatments or interventions are more or less effective for patients with different needs or backgrounds. By understanding how age, gender, income, education level, immigration status, Indigeneity, health behaviours, etc. intersect and affect our health, researchers and health care providers will be able to develop and offer treatments that are more specialized, specific and relevant to each individual’s situation.

Yes. Health Data Research UK (HDR UK) works with organizations in the United Kingdom that hold and manage data to connect the data and make it easier to access for research. By doing so, HDR UK makes it easier for researchers to understand what causes diseases and poor health, discover new treatments, and identify factors that can improve health. In Australia, the Population Health Research Network (PHRN) is a data linkage infrastructure comprising data centres across the country, which securely and safely links and integrates data collections from a wide range of sources. The International Population Data Linkage Network (IPDLN) facilitates communication between organizations that specialize in data linkage and users of linked data, providing space for discussion, exchange of ideas and learning with the common interest of data linkage for the betterment of population data linkage research.

SPOR is short for the Strategy for Patient-Oriented Research, which was launched in 2011 by the Canadian Institutes of Health Research (CIHR), a federal agency that is the largest funder of health research in Canada. In 2018, HDRN Canada was awarded a $39M grant from CIHR, with in-kind contributions from provincial, territorial and pan-Canadian organizations to develop the SPOR Canadian Data Platform. Patient-oriented research seeks to engage patients, caregivers and families as partners in the research process. For example, they may provide input on research topics, or help with the interpretation of findings and the communication of research results.

Through its Data Access Support Hub (DASH), HDRN Canada supports researchers who want to conduct studies involving two or more provinces and/or territories. For example, Dr. Emily Marshall at Dalhousie University and her co-investigators are studying the effectiveness of wait lists for primary health care, examining the amount of time it takes for people to access a primary health care provider in Ontario, Quebec and Nova Scotia. Since the start of the COVID-19 pandemic, HDRN Canada has also supported COVID-19-related research in a variety of areas, including emergency medicine, surgery, pediatric diabetes, neonatal care and virtual care.

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