Patient FAQ

What is POPLAR?

POPLAR is the Primary Care Ontario Primary Care Learning and Research Network. POPLAR is a collaboration of practice-based research and learning networks that will securely collect and de-identify electronic medical record (EMR) data (Please see data questions for the definition of EMR) for the purposes of research.

POPLAR aims to build a provincial database that will provide information on the vital work primary care does, and to support family doctors and clinics in delivering optimal care across Ontario.

Once built, the database can be used to:

Measure how common some chronic conditions are, such as high blood pressure or diabetes.
Understand more about how these conditions are managed today.
Discover what could be done to improve care for patients in the future.

What is a Practice-Based Learning and Research Network (PBLRN)?

Practice-based research and learning networks (PBLRNs) are not-for-profit research networks that are usually based within a university. PBLRNs work with primary care practices to better understand and help improve care in Ontario. There are seven PBLRNs in Ontario; several have been collecting and analyzing primary care EMR data for well over a decade. These PBLRNs have come together to form POPLAR so that their work can be more efficient and impactful.

How did POPLAR come to be?

PBLRNs began in Canada about 25 years ago. In 2008, a national collaboration between PBLRNs, called the Canadian Primary Care Sentinel Surveillance Network (CPCSSN.ca) was initiated. PBLRNs started collecting and forwarding primary care data to the CPCSSN to create a national primary care database. In 2021, the 7 regional PBLRNs in Ontario came together to create POPLAR, the Primary Care Ontario Practice-based Learning and Research Network.

The 7 regional PBLRNs are:

Northern Ontario School of Medicine Research Toward Health Hub (NORTHH)
Ottawa Practice Enhancement Network (OPEN), University of Ottawa
Eastern Ontario Network (EON), Queen’s University
McMaster University Sentinel and Information Collaboration (MUSIC)
University of Toronto Practice-Based Research Network (UTOPIAN)
Deliver Primary Healthcare Information (DELPHI), The University of Western Ontario
Equity, Performance, Improvement and Change (EPIC), The Alliance for Healthier Communities

Please visit our Networks page to learn more

How is POPLAR governed?

Representatives from all 7 PBLRNs in POPLAR oversee its work. All of the PBLRNs follow the same Information Governance framework. This is a guide that will direct how the data will be accessed and used. It allows regional PBLRNs to make certain decisions on their own while also making it possible for them to cooperate on projects and processes. The Data Controller for the POPLAR system and Data Platform will be Queen's University.

Please visit our Governance page to learn more

Why does POPLAR have multiple networks?

The Primary Care Ontario Practiced-based Learning and Research Network (POPLAR) is a Network made up of 7 Regional practice-based research and learning networks (PBLRNs) from across Ontario. Initially, Primary Care Providers just provided data to their regional (local) PBLRN, which in turn provided it to Canadian Primary Care Sentinel Surveillance Network (CPCSSN.ca), the national PBLRN. Now, they are all part of POPLAR and working towards having one database across the province. Many of the PBLRNs are actively recruiting providers and collecting data.

What is CPCSSN?

CPCSSN (pronounced “SIP-SIN”) is the Canadian Primary Care Sentinel Surveillance Network. CPCSSN is Canada’s first system set up to collect and monitor information about multiple diseases experienced by patients across Canada. CPCSSN is a network of 12 practice-based research and learning networks in 8 provinces and 1 territory. Currently, over 2 million patients and 1500 primary care clinicians participate in CPCSSN.

What is Electronic Medical Record (EMR) data?

Electronic Medical Record (EMR) data, also called an electronic patient chart, is the medical information held at your family practice. Your family practice is where you go for appointments with your family doctor. EMR data is the information that your doctor or nurse practitioner enters into their computer system during an appointment. EMR data can contain information about a patient’s age, health conditions, medications, vaccines, allergies, and visit information, for example.

Why is Electronic Medical Record (EMR) data important?

Electronic Medical Record (EMR) data is a very rich source of information. When EMR data from many Ontarians is put together, it can help us understand and improve health care for people and communities across Ontario. The more data included in the database means the data will be more representative of the Ontario population and can provide a clearer picture of the health of Ontarians.

Many Ontario primary care providers have already joined their local PBLRN to make this possible. Any information that could identify the individual patients is removed through a process called de-identification.

What type of information will be collected?

Data that could be used to identify people, such as names, addresses, or birthdates will be removed and will be stored separately and securely. The POPLAR data that will be used to answer questions will never contain information that could identify the patient. The data can allow EMR records to be linked to other data, such as administrative data from many other sources; for example, hospital data. Currently, the data within a patient’s EMR at a family practice does not automatically link with hospital data.

What will the data used for?

Once there is POPLAR data it will be used to help improve our healthcare system in many ways. For example, it can help:

researchers find better ways for health care providers to diagnose, treat, and care for people with conditions such as diabetes, depression, high blood pressure, Alzheimer’s Disease and Parkinson’s Disease, as well as other conditions.

health care providers understand how well they are doing and find ways to improve.

people who fund and manage the health system (how healthcare is managed across the province) understand what is working well and what could be better.
researchers, health care providers, and public health agencies keep track of different illnesses and how they spread.
researchers understand the different things that affect people’s health.

Where else will the data go?

POPLAR is part of a national organization called the Canadian Primary Care Surveillance Network (CPCSSN.ca). POPLAR will send a subset of deidentified data to CPCSSN. Together, we can make sure that healthcare data from Ontario is represented in the national primary care database.

We may also forward a copy of the POPLAR Database to other trusted organizations. One of these is ICES (www.ices.on.ca), an arms-length organization created by the Ontario government to help measure the quality of health care and understand the health of people in Ontario. Another trusted organization is Diabetes Action Canada (diabetesaction.ca), a network of researchers, health care providers, patients, and health policy experts who work together to help improve the lives of people who have diabetes.

Once data is collected at POPLAR, it may also be used for clinical research and analysis of health problems that patients are facing. It can also also used to provide feedback to your family doctor or nurse practitioner, where the information can be used to improve quality of care. Potentially, data may be used under the direction of your family doctor or nurse practitioner to inform you about research studies that may be of interest to you; patient participation in any study is always voluntary.

Data in POPLAR will never be sold.

What about my privacy?

Your privacy is important to us. We are committed to keeping your personal health information safe and confidential at all times. Information collected from the EMR will be stored in a secure central electronic system with strong safeguards to protect your privacy.

We at POPLAR follow Ontario’s Personal Health Information Protection Act (PHIPA). You can read about these laws here.

Where will the data be stored and will it be safe?

The data will be stored in a secure database at the Centre for Advanced Computing at Queen’s University. This data will be de-identified and will be stored on an encrypted hard drive in a secure environment. The secure environment is protected with passwords and physical safeguards, so only people with specific permissions can access it.

Encryption allows information to be converted into a secret code that hides that information’s true meaning. The data will be stored in a way that cannot be understood without the use of passwords and codes.

Who will have access to the data?

Access to POPLAR data will be strictly limited and controlled. Only authorized personnel will be able to access POPLAR, and they will only access it when they need it to advance the work of POPLAR and/or for a project that has been approved by a Research Ethics Board (REB). In order to use the data, researchers have to complete privacy training and certification in research ethics. They must also sign a pledge of confidentiality and acceptable use agreements which describe the terms and conditions of their data access.

Researchers conducting REB-approved projects authorized by POPLAR will be granted access to specific sets of de-identified data within our secure virtual environment.

Why would I want to have my data included in POPLAR?

There are several reasons why you may want to have your data included in POPLAR:

Having each person’s data included in the database helps ensure that the data is representative of the Ontario population. The more data included in the database means a clearer picture of the health of all Ontarians.
The more data that is included in the database means that the researchers can better understand some illnesses. This information may help healthcare providers to improve care for patients.
Having your data in the database could not only improve your own experience of healthcare in Canada, but it could also improve the delivery of healthcare for others too!

Do patients provide consent?

Primary care providers and primary care organizations in Ontario are invited to participate in the POPLAR System and Data Platform through their regional network. These providers and organizations are called the Health Information Custodians (HICs) who give permission to have their patients’ deidentified health information shared with POPLAR using data sharing agreements.

Providers inform their patients about the regional network including that there will be a POPLAR database through posters or other means. Patients are free to withdraw from POPLAR at any time.

Does POPLAR receive any patient input?

Yes, the POPLAR Patient Advisory Committee has patient representatives from each of the regional networks in POPLAR. The Patient Advisory Committee represents and articulates patient needs, expectations, and experiences to the POPLAR leadership, committees, and other stakeholders. The POPLAR Patient Advisory Committee Co-Chairs also sit on the POPLAR Steering Committee. POPLAR is also working with the Patient Expertise in Research Collaboration group.