Contact NORTHH@nosm.ca to find out more about how to join NORTHH.
NORTHH and the six other provincial Primary Care Research and Learning Networks (PBRLNs) have coalesced to enhance our efficiency and potential for impact. Together, we form the Primary Care Ontario Learning and Research (POPLAR) Network. And soon, the electronic medical record (EMR) data of over 1.5 million patients of primary care providers participating in these networks will be merged in POPLAR to allow for very meaningful evaluations of primary care for the purpose of research, quality improvement, and planning.
EMR data is always de-identified, securely stored, and its access is highly controlled. Request for accessing EMR data for research involves a rigorous evaluation process of the project, including vetting its ethical merit.
EMR data can be used to understand health problems seen in family practices to build a better health care system. There are many important health questions that can only be answered in family practices. Your family doctor or nurse practitioner at this clinic recognizes the value and need for these data to improve your care and the care of others like you. As part of this, EMR data are transferred to a “Data Safe Haven” while protecting your privacy. Learn more about NORTHH.
See below for a brief introduction to our work, and a more detailed presentation:
The POPLAR Data Platform is used to securely collect EMR data in family practices and primary care sites across Ontario. This is coordinated by the University of Toronto Practice-Based Research Network (UTOPIAN). The data undergoes standardization and de-identification processes, which means that information such as names or phone numbers is not included in the database.
We store de-identified EMR data for research and quality improvement. For example, to:
NORTHH collects information about health and care, including how illnesses are diagnosed, treated, and managed. In addition to clinical information, the database also includes demographic information such as postal code and gender. Data that can identify people such as names or addresses are not a part of the Data Platform. These will be collected to link, with privacy safeguards, to other heath databases for the study of health conditions. To improve the removal of identifiers, they are encrypted, safeguarded, and stored separately from the Data Platform.
A copy of the NORTHH data may be forwarded to authorized organizations such as: the Canadian Primary Care Sentinel Surveillance Network, the Institute for Clinical Evaluative Studies or other prescribed entity, and Diabetes Action Canada. This will be done to support important research projects with full ethics approval and privacy safeguards. With NORTHH, we want to make sure that communities and practices in Northern Ontario can make their own decisions about how their data is used.
Privacy is important to us. We are committed to keeping personal health information safe and confidential at all times. Information collected from the EMR is stored in a secure central electronic system with strong safeguards to protect privacy.
We are working on establishing NORTHH operations and governance that respect Indigenous data sovereignty and follow OCAP® Principles.