Privacy and Security Questions
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.
POPLAR follows Ontario’s Personal Health Information Protection Act (PHIPA), 2004. 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 ICES.
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 through ICES, 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). 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 and ICES will be granted access to specific sets of de-identified data within our secure virtual environment.
What is a Research Ethics Board (REB)?
A Research Ethics Board (REB) ensures that research meets scientific and ethical research standards to protect human research participants. An REB reviews and approves research studies before the research is started. Typically, an REB is associated with a university or hospital.
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:
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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.
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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.
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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!
Is my data being collected?
To find out if your data is being collected, ask your primary care provider if they are participating in POPLAR (through one of the regional PBLRNs in Ontario). If at any time you wish to opt-out, please tell your primary care provider.
*Please note, any data currently collected by the regional PBLRNs is not yet being shared to POPLAR.
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.
Can patients opt out?
YES. If your healthcare provider is sharing data with POPLAR, 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.