Northern Ontario data to shape uniquely Northern primary care research
Dr. Barb Zelek and a team at the Northern Ontario School of Medicine are building Northern Ontario’s first research network that includes datasets containing de-identified primary care patient data which can be made accessible to Northern primary care researchers, clinicians, and organisations.
It’s the first health information platform of its kind in the region, and the first to prioritize Indigenous data sovereignty in its operations. “We will have an Indigenous data project management lead ensuring Indigenous data sovereignty principles are upheld in partnership with communities and to increase inclusive, equitable primary care research capacity at NOSM,” says Dr. Zelek, NOSM’s Division Head of Clinical Sciences and practising rural generalist family physician in Marathon. “For Northern physicians and primary care researchers, it means accessing a Northern primary care database to help answer your clinical and research questions, as well as support practice-based quality improvement initiatives.”
“It’s an opportunity to do applicable Northern-focused research using data from the North to improve health outcomes in the North,” says Dr. Zelek. Fittingly, the project is named NORTHH —the Northern Ontario School of Medicine (NOSM) Research Toward Health Hub.
“We want Northern physicians and their practices to join the NORTHH network. It’s about quality improvement and many physicians have expressed an interest in wanting to work with NORTHH. Our network is currently seeking clinicians and researchers who are both interested in providing data for and access to this database to support their own practices and inform better care in Northern Ontario. We will also be able to inform medical education at NOSM by using the data to know what health conditions patients are presenting with in primary care.”
Dr. Barb Zelek
The NORTHH team is working in partnership with the POPLAR Network (Primary Care Ontario Practice-based Learning and Research Network) and UTOPIAN at the University of Toronto to create Northern Ontario datasets. Created in 2013, UTOPIAN is an established practice-based research network in Toronto, created as the “living laboratory that partners front-line care providers with academic researchers,” and supports NORTHH by providing a robust and secure computing system. The NORTHH network has its own dataset within UTOPIAN that is coordinating the provincial POPLAR Data Platform.
Each of the provincial network’s datasets feed into the POPLAR Network, Ontario’s primary care practice-based learning and research network, that NORTHH is co-leading with regional networks from across the province. “Much funding in research still goes to secondary and tertiary hospital settings. NORTHH offers an equal opportunity for primary care providers to conduct research that is also accessible to practices across Northern communities.”
It is part of wider regional, provincial and national collaborations all aiming to strengthen primary health care. “If you have bigger research questions you’ll also gain access to the larger pool of primary care data in Ontario and nationally. It’s also an opportunity to gain new qualifications including being able to access patient data and outcomes, using data presentation tools available through the networks, or for example, understanding common diseases, or comparing your population to others.”
“The greater benefit of joining NORTHH is connecting with NOSM’s excellent team of researchers and access to our supportive community of practice in Northern Ontario.”