Data profile: Primary care electronic medical records
On this page
- Primary care electronic medical records
- How primary care EMR data can support public health
- How PHAC will use primary care EMR data
- How your privacy is protected
- Consent to share your information
- Data journey
Primary care electronic medical records
Electronic medical records (EMR) are digital records of visits to your primary care clinic that are entered into the computer by your health care provider. They contain information such as:
- allergens
- test results
- risk factors
- prescriptions
- medical history
- disease diagnosis
Health care providers use your EMR to keep track of your health in a safe and consistent manner.
How primary care EMR data can support public health
PHAC receives public health data from various sources, such as public health assessment, surveys, engagement and consultations. The COVID-19 pandemic showed us that traditional data can leave gaps with respect to monitoring complex health conditions.
To help fill some of these gaps, PHAC is working with the Canadian Primary Care Sentinel Surveillance Network (CPCSSN) to access primary care EMR data. This data complements existing data sources and supports public health assessment and research.
Primary care EMR data is different from the usual surveys and administrative data we use at PHAC. It follows a very large group of people over a long period, which makes it easier to spot patterns that only show up in larger data sets. It also has more detailed information, like specific blood pressure readings.
In the scientific community, this kind of data is known as a large sample of repeated measures. It takes multiple readings about the same person over a long period. By using data like this, PHAC can look for patterns that only show up in large datasets and ultimately improve public health outcomes for people in Canada.
How PHAC will use primary care EMR data
Primary care EMR data can provide key insights into the health of people in Canada. By using this data, we aim to improve risk assessment and trend analysis in several priority areas. For example, the large primary care EMR dataset can help us better understand antibiotic use and resistance. It can also help us further understand post COVID-19 condition across Canada.
Because we're only starting this research now, we can't predict exactly what we'll learn from it. Over time, key health topics in Canada may change, so priorities for research topics will shift to reflect that.
How your privacy is protected
CPCSSN must follow all privacy legislation in the province where the data is collected.
All CPCSSN data is de-identified before PHAC can access it. This means that personal information like names, health card numbers and other personal identifiers are completely removed from the data set.
Before a PHAC researcher can access the data, they must complete a privacy checklist and submit it to the Privacy Management Division (PMD) for approval. The checklist lays out:
- who wants to use the data
- how they plan to use it
- why they need access to it
The application is then sent to CPCSSN, where it's reviewed by their Data Access Selection Committee. Once approved, the application receives research ethics clearance and CPCSSN will create a secure research environment (SRE) for the researcher to access the data.
The CPCSSN-SRE is a secure, encrypted connection between the researcher's computer workstation and the SRE workspace. It doesn't allow the researcher to copy, screenshot or have access to the internet while using the data. Accessing data through the CPCSSN-SRE means files don't need to be transferred electronically between computers. This reduces the risk of a data breach.
PHAC researchers can only access the data through this secure process. They can't download the raw data, link it to other datasets or send it to someone else. Researchers can only export data that has been aggregated (summarized or grouped together, for example by health region or summary tables).
To learn more about privacy protections, please see the CPCSSN privacy policy.
Consent to share your information
All patients have the right to opt out of sharing their data with CPCSSN. You can do this by talking to your primary care practitioner or clinical staff member participating in CPCSSN.
Find out more about the opt-out policy in the CPCSSN FAQ.
Data journey
The journey that a piece of data takes is complex. The following describes how data from your medical records gets from where it's collected to our researchers.
The primary care EMR data in the CPCSSN dataset comes from consenting patients at primary care clinics across Canada. When you visit your primary care practitioner, they add notes about your visit to your EMR in their system.
Twice a year, CPCSSN extracts the data from the practitioner's system, and puts it into their secure electronic storage. The team at CPCSSN then cleans and processes the data to make it suitable for research. Some examples of steps in the cleaning and standardizing process include:
- making sure that there are no blank lines or duplicates
- checking for consistent terms for conditions or symptoms
- making sure that everything is in the same order in records
Importantly, CPCSSN also processes the data to remove or obscure identifying information. For example, they could replace your name and health card number with a unique identifier. They could also change your date of birth to just your year of birth, so that it's harder to link the record to you.
Once CPCSSN has cleaned and processed the data, approved PHAC researchers can access the data through the CPCSSN-SRE. They can analyse and interpret what they see to help answer their research questions. Only the final analysis can be exported out of the CPCSSN-SRE, so personal information never leaves the CPCSSN server.
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