It was an evening designed to bring together people who would otherwise not meet. When the Saskatchewan Centre for Patient-Oriented Research (SCPOR) first announced it would be holding its first ever patient-oriented research speed-networking event, the response was overwhelming. Tickets for the free event were gone within a matter of days, and nearly half of the sixty people registered were patients.
Event organizer Charlene Haver, Methods Platform Lead at SCPOR, credits the turnout as a sign of a growing cultural shift in the research landscape in Saskatchewan.
“Patients want to engage in meaningful and impactful ways in health research,” she explains.
“And researchers are looking for ways to elevate patients to roles where they can help conceptualize, design and help focus a research study. The aim is always the same: research that is meaningful and has direct impact.”
The evening featured a panel discussion with Patient-family advocate and cancer survivor, Terri-Hansen Gardiner, and community-based health researcher and surgical oncologist Dr. Gary Groot. The two are currently working together on research that will focus on creating culturally-responsive supports for Indigenous patients navigating Saskatchewan’s cancer care system.
“I had heard about the Indigenous family advisory board,” explains Hansen-Gardiner.
“As I sat there and I listened to what Dr. Groot and his team were saying, it was the same mandate of what I wanted to accomplish. That’s what I want to do. After the meeting I spoke to Dr. Groot and his team and I said I want to be part of what you are doing.”
Although they represent two very different perspectives of the patient-care provider dynamic, a common concern drew them together. Both had seen the ways systemic barriers and historical legacies were having a direct impact on Indigenous Cancer Patients, making it difficult to traverse what is often a confusing cancer care system. Both wanted to do something about it.
The pair are collaborating on two projects funded by the Saskatchewan Health Research Foundation (SHRF), both of which will look at the benefits of culturally responsive supports for Indigenous Cancer patients. Their research will also include a pilot project on Indigenous Patient Navigators.
“When it came to coming up with the questions we wanted to ask people who we wanted to follow over the course of their cancer care journey, it was patients we turned to say, ‘What are the right questions we should ask and how are we going to ask those questions?’”
“When I first came up with the idea of applying for a grant to do this work, I had an elder on my team who is also a patient and had breast cancer herself. I was sharing with my team this exciting idea of how we were going to do this grant and how it was going to be shaped. And she listened and at the end politely said, ‘No. That isn’t going to work. If you want to be successful you have to do it this way.’”
“So we completely re-shaped our proposal based on her recommendations,” Groot explains.
Dr. Groot also says patients play an integral role at every step of the research process.
“Already, the patients are saying when it comes time to tell back what we have learned, these are the ways we want to tell it back to the community.”
“I can honestly say, I wouldn’t be doing any of the work that I am doing if it wasn’t for the patients on my team.”