By Farha Akhtar
A packed room filled with patients, researchers, students, and health system leaders listened intently as Janet Gunderson, a Patient Partner described her involvement with the national Chronic Pain Network (CPN).
"Patients are quite involved in the CPN governance,” she explains.
“There is actually a patient co-chair on each committee. We meet regularly and are able to keep connected. We feel very listened to and the network responds well to our suggestions or questions.”
“For example, we wanted to learn about the other projects in the network that we were not involved in. The network listened to us, and now we have special presentations from other research teams every second month.”
Janet was a member of one of four different SPOR Network teams which presented at a special gathering on June 25th called “Mapping the Strategy for Patient-Oriented Research in Saskatchewan” which was hosted by SCPOR. It was a unique event in that two vital components of CIHR’s SPOR strategy: the networks and the units, came together for a public dialogue.
Canada’s SPOR Networks are an initiative of the Canadian Institutes for Health Research (CIHR) that are part of the Government of Canada’s larger Strategy for Patient-Oriented Research. CIHR describes them “as national collaborative research networks involving researchers, patients, policy makers, academic health centres, health charities and other stakeholders.” The networks focus on specific health areas which have been identified as priorities in different provinces and territories.
Researchers Dr. Joanne Kappel and Dr. Carol Ann Bullin co-presented as members of the Can-SOLVE Chronic Kidney Disease Network. This network features 18 different research projects across the country led by investigators representing many diverse disciplines.
In their presentation, Kappel and Bullin described the ways they work collaboratively and closely with Indigenous people with kidney disease. Both credit their involvement in a SPOR network with helping actually amplify their research.
“It has helped us include the perspectives of Canadian Indigenous Peoples that has resulted in synergies in other projects,” they explain.
Synergy was the theme of the day, as the host organization, SCPOR, billed the event as a chance for not only the research community and patients to learn more about the SPOR networks, but also for a chance for the networks and SCPOR to get to know each other better.
“The goal of the event was to bring together all of the SPOR funded entities in Saskatchewan to share what we have been working on, share the impact we have created and share how patients have been part of the journey,” explains Dr. Charlene Haver, Lead of SCPOR’s Methods Platform.
“I think we achieved beyond our goal. We nearly sold-out seats to the event, with 70 people in attendance. We also had eleven patient and family advisors attend, which shows how much interest was generated in the province. We also had representation from Indigenous peoples, including an elder.”
“I was incredibly pleased with the level of commitment from the SPOR network presenters and their eagerness to participate in the session. Leaving the session, many attendees wanted to know more, which in my eyes shows continuous interest in the SPOR initiatives in Saskatchewan.”
The finale of the event was a visioning session led by Scientific Director Dr. Malcolm King where patients and the SPOR-funded entities had a chance to describe the future they hoped to build together.
Chris Plishka, SCPOR Methods Platform Facilitator says bringing together Can-SOLVE CKD, the Chronic Pain Network, Diabetes Action Canada, and Primary and Integrated Health Care Innovations (PIHCI) all in one place helped to spark a dialogue which he hopes will result in greater collaboration in the future.
“This was a first in Saskatchewan,” he says.
“Sitting down together, discussing our work, seeing the ways our ideas coalesce. That was really exciting.”
As Dr. Haver points out, it takes a symbiotic relationship in order to really advance POR.
“SPOR is allowing research to move the dial to put knowledge into practice and make change for patients.”