For the Public

From the moment you are born, governments and public bodies collect information about you throughout your lifetime – like when you attend school, get a job, visit the doctor, fill a prescription, and more. Researchers can use these data to learn about which health services are working, and which are not, where more services are needed, and how to help people stay healthy.

HDRN Canada Public Advisory Council (PAC) Annual Report, 2020-2021

What are health and “health-related” data?

Health data are information about the health and well-being of populations, or groups of people. These may include information about:

  • Accessing health care services (e.g. visiting the Emergency Room, making an appointment with a healthcare professional, filling a prescription)
  • Health behaviours (e.g. diet, exercise, smoking, alcohol consumption)
  • Sex, geographic area, social services use, education level, income, immigration status and other “social determinants of health” which impact the health and well-being of all Canadians

What is Health Data Research Network Canada?

Health Data Research Network Canada ("HDRN Canada") is a group 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.

Why is this needed? 

Currently, each provincial, territorial, and national data centre 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 pan-Canadian data to perform rigorous studies so that we can determine what is working in our health systems, and what needs improvement.

How will HDRN Canada improve my healthcare?

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 will support research that helps us understand health challenges across Canada, and possible solutions. Through HDRN Canada will have a better ability to know which health care services and programs should be spread so that they can benefit patients in other provinces and territories.

What kinds of projects use data from HDRN Canada organizations?

Through its Data Access Support Hub (DASH), HDRN Canada supports researchers who are looking to conduct studies that involve 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. They are looking at the amount of time it takes for people to access a primary health care provider, such as a family doctor, 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.

How can I get involved if I’m not a researcher? 

HDRN Canada is committed to deep involvement of patients and members of the public, through its Public Advisory Committee (PAC) and other mechanisms.

Subscribe to receive updates about opportunities to get involved.

Frequently Asked Questions

What kinds of health data will be accessible to researchers via HDRN Canada?

Administrative and clinical data will be available through HDRN Canada's Data Access Support Hub, such as:

  • Records of health services provided by physicians, nurses and other healthcare 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 sites 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 well-being of all Canadians. You can learn which datasets are accessible to researchers through the DASH data inventory.

Will researchers be able to identify me in the datasets that they use?

No. The data that is available for research does not include any information that could be used to directly identify you.

Datasets accessible through the Data Access Support Hub have:

  • NO Names
  • NO Addresses
  • NO Dates of birth
  • NO Health card numbers 

In addition, researchers must sign binding agreements stating that they will not attempt to re-identify individuals.

Will I be able to obtain my own health data through the Data Access Support Hub (DASH)?

No. The datasets that HDRN Canada 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.) is separated from the data available to researchers and stored separately. Your local data centre will not be able to 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). 

You can also contact your primary care provider or the hospital where you receive healthcare services. They may be able to provide information about your health data.

In the light of the many data breaches that have been reported, how can you be sure the data intended for research studies won’t be stolen or misused?

Each data centre has strict policies and requirements with regards 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.

For information about specific policies and procedures, please contact your local data centre.

Are there similar platforms in other countries? If so, what benefits have they provided? What are some specific examples?

Yes. For example, Health Data Research UK (HDR UK) works with organizations in the UK 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.

Most recently, HDR UK has been able to use its data to better understand the effects of COVID-19, e.g. how underlying health conditions can affect mortality rates, the psychological impact of COVID-19 on patients and mental health care workers, the impact of COVID-19 on patients with cancer and cancer services, and more.

Will my data be used for commercial purposes? If so, how will this happen and what safeguards are in place to prevent misuse?

Data centres that are part of HDRN Canada have different policies about if and how companies 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.

Please contact your local data centre for more information.

Will the increasing emphasis on data help make care more standardized and less personal or individualized?

No. Access to data will enable researchers to better understand the many factors and variables which 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 different aspects of our lives (e.g. age, gender, income, education level, immigration status, Indigeneity, health behaviours, etc.) intersect and affect our health, researchers and healthcare providers will be able to develop and offer treatments that are more specialized, specific and relevant to each individual’s situation.

What is HDRN Canada’s connection to SPOR?

SPOR is short for the Strategy for Patient-Oriented Research. SPOR 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 grant from CIHR and provincial, territorial and pan-Canadian organizations to develop the SPOR Canadian Data Platform.

Patient-oriented research is about engaging 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. In other cases, patients are involved in the governance of SPOR initiatives, such as advising and contributing to decisions about what a SPOR initiative will focus on, how its funding should be spent, and what impact it should have.

How can I keep informed about the development of HDRN Canada?

You can subscribe for updates here.

How can I help influence the priorities and direction of HDRN Canada?

You can subscribe to receive opportunities to get involved.