The Northern Ontario School of Medicine (NOSM) is creating a Practice-Based Research Network (PBRN) called NORTHH (NOSM Research Toward Health Hub). A PBRN is a group of physicians and primary care providers from different communities that work together to improve primary care by addressing issues that matter to patients, health care providers, and communities. To help with their research, PRBNs obtain data from the electronic medical record (EMR) of individual patients from participating health care practices.
When PRBNs collect data from a patient EMR, all identifying information is removed and the rest of the information is stored securely in a centralized database. In this case, NOSM is working with UTOPIAN (the University of Toronto PBRN) to store the data obtained for NORTHH. UTOPIAN has over 10 years of PBRN experience, rigid guidelines for data collection, and very secure storage and data management. Once the data is stored in a highly secure manner within UTOPIAN, it can then be accessed for research purposes after an approval process that includes participating health care providers and practices, NORTHH, and respective research ethics board.
The NOSM team is also working with all the other Ontario PBRNs that are hosted at each of the other Ontario medical schools. We are excited to be the final medical school in Ontario to create a PBRN.
The Marathon Family Health Team (MFHT) practitioners have been approached to become the first clinical practice to join the NOSM PBRN. The physicians and nurse practitioner are excited about this opportunity. They want to make sure our patients understand more about what this means for them.
As a patient of Marathon Family Health Team, your physician/nurse practitioner has agreed to participate in NORTHH. This means that the data from the EMR at MFHT will be used. None of your personal information is linked to the data that is obtained. The data is also removed of any identifiers that reveal someone’s ethnicity.
We are committed to keeping your personal health information safe and confidential at all times. Information collected from the EMR is stored in a protected central electronic system with high security to assure your privacy.
If you do not want the data from your chart to be used, you can opt out of this initiative. Please let your family doctor or nurse practitioner know that you do not want to participate. You can also email firstname.lastname@example.org.
Any data that is accessed from the database must be approved by research ethics. As NORTHH, we will have access to our subset of data within UTOPIAN that we can use for our own research purposes to answer questions and improve the health of patients in Northern Ontario.
Some people wonder what the benefits are of participating in the PBRN. In the short term we are working with a provincial group that is hoping to find ways to track COVID-19 symptoms using the data from the EMR to predict a possible second wave of COVID-19. We hope this could lead to an early identification of a potential second wave of COVID-19 specifically in our area. If a community in Northern Ontario had a question(s) related to primary health care, the PBRN would welcome discussions to design a project that would work towards answering these question(s).
An example of what the data has been used for in the past include: a) Measure how common some chronic conditions are such as high blood pressure and diabetes; b) Understand more about how these conditions are managed today; c) Discover what could be done to improve care for patients in the future.
In the fall of 2020, our team hopes to bring together a group of stakeholders including clinicians, patients and community members, Indigenous stakeholders, educators, and researchers, to come up with an initial research agenda for the PBRN in Northern Ontario. We will also work to engage local Indigenous partners to ensure that Ownership, Control, Access and Possession (OCAP) principles are integrated into data governance policies.
Marathon Family Health Team is excited to support this innovative initiative.
If you have any questions about this project, please email Dr. Barb Zelek one of the co-leads for the project at email@example.com
- DeVoe JE, Likumahuwa S, Eiff MP, Nelson CA, Carroll JE, Hill CN, et al. Developing a new Practice-based Research Network (PBRN): lessons learned and challenges ahead. J Am Board Fam Med JABFM. 2012;25(5):560–4.
2. Jones C. Laboratories of primary care. Can Fam Physician. 2006 Sep 10;52(9):1045–6.