Information for Patients

Information for Patients

Frequently Used Acronyms

EON: Eastern Ontario Network

The Eastern Ontario Network (EON - pronounced "EE-ON") is a network of over 150 primary care providers in practice at 14 clinics across Eastern Ontario.

EON is situated at the Queen’s University Department of Family Medicine.

Family doctors and nurse practitioners can choose to register with EON to contribute their medical record data to the database. A clinician may register with EON to support healthcare research and to better understand how they can improve their own practice.

CPCSSN: Canadian Primary Care Sentinel Surveillance Network

CPCSSN (pronounced "SIP-SUN") is Canada’s first multi-disease electronic medical record surveillance system. CPCSSN securely collects de-identified health information from Electronic Medical Records (EMRs). EON is one of the 13 regional networks that make up CPCSSN.

PBRN: Practice-based Research Network

Practice-based Research Networks (PBRNs) have been described as “new clinical laboratories for primary care research and dissemination”1

PBRNs seek to carry out medical research to help real people, by carrying out relevant research in community settings, and translating those research findings into practice.

[1] Lindbloom EJ, Ewigman BG, Hickner JM. Practice-based research networks: the laboratories of primary care research. Med Care. 2004 Apr;42(4 Suppl):III45-9. PMID: 15026664.

EMR: Electronic Medical Record

An Electronic Medical Record is a patient’s digital file that is populated by the patient’s family doctor and family health team. The file contains information such as health history, medicines, test results, immunizations, and treatment plans.

Use of Patient Data

 What is Electronic Medical Record (EMR) data?

Electronic Medical Record (EMR) data is the information that your family doctor enters into their computer system when you go for an appointment. EMR data can contain information about a patient’s age, health conditions, medications, vaccines, and allergies, for example.

 What does "de-identified data" actually mean?

“De-identified” patient data is information taken from a medical record that has had all the “direct identifiers” removed.

“Direct identifiers” include name, full date of birth, address, and email address.

This means that the data no longer contains information that can be used to identify the individual patient.

 What is your data used for?

EMR data is extracted to create a database of high quality, de-identified health information to support better research and improve the diagnosis, treatment and care of Canadians with conditions such as diabetes, depression, high blood pressure, Alzheimer’s Disease and Parkinson’s Disease, as well as other conditions.

Data can also be used to help clinicians understand how their practice is performing, and to identify any areas for improvement.

A subset of the data that EON collects is sent to the Canadian Primary Care Surveillance Network (CPCSSN). This ensures that healthcare data from Eastern Ontario is represented in the national primary care database.

 Where is your data stored and is it safe?

The data is stored in a secure database at the Centre for Advanced Computing at Queen’s University. This data is de-identified and is stored on an encrypted drive in a secure environment.

Access to the data is strictly limited to authorized personnel, such as the EON Data Analytics Manager or other authorized data analysts. All personnel with access to the database are required to sign Non-Disclosure Agreements. Access to the EON/CPCSSN database is restricted through password-protected and encrypted hard drives in computers located in a secure location, with additional physical safeguards with access to only those who have specific permission.

 Who has access to the data?

Only researchers approved by EON can access fully de-identified data sets from EON.

An approved researcher can only access the specific data that is required for their research.

Access to EON data is strictly limited to authorized personnel.

 What are the benefits of having your data included in EON?

There are several reasons why you might want to have your data included in EON:

  1. Having your data included in the database helps ensure that the data is representative of the Canadian population. The more data included in the database provides a more accurate depiction of the health of all Canadians, helping to better shape healthcare across the country.
  2. The more data that is included in the database means that researchers can better understand some illnesses. This information may help healthcare providers to improve care for patients.
  3. Your data could not only potentially improve your experience of healthcare in Canada, but it could also improve the delivery of healthcare for others too!

 Can patients opt out?

YES. If your healthcare provider is registered with EON, you may request that your health information not be included at any time. Your medical care will not be affected if you choose to not participate. To find out more, just ask your healthcare provider.