Patient-Oriented Research brings lived experience to Research Design
-By Farha Akhtar
Studies have suggested that over 70 percent of Canadians have been exposed to at least one traumatic experience in their lifetime. These experiences can have a direct or indirect impact on a person’s overall mental and physical health and can lead to mental illness, chronic illness, addictions, a reduced quality of life, even suicide.
The staggering prevalence of traumatic experience in the population has prompted numerous provinces across the country to adopt frameworks to better educate and prepare health care providers to be trauma-informed. Service delivery that is trauma-informed understands and responds to the impact of trauma while focusing on a patient’s sense of safety, their agency when it comes to decision-making and choice, and their connection with their care provider.
Seint Kokokyi, a PhD Student at the University of Regina, felt it would be worthwhile to research patient care as it aligned with two of Saskatchewan’s strategic priorities: primary care and mental health.
When she first began reading the literature about trauma-informed care, she learned the majority of patients with mental health concerns are more likely to visit their primary care physicians first instead of seeing a mental health professional. The burden this places on primary care physicians is evident with clinicians reporting insufficient knowledge about trauma, and not knowing what to do when patients visit them under these circumstances.
“Our goal is not to screen for trauma,” Seint explains, “It’s about introducing the framework in their clinic so clinicians can apply that framework to all patients.”
But when Seint began looking more closely at the literature about trauma-informed care frameworks, she saw a piece missing. The opinions of stakeholders: patients themselves and those delivering health services seemed noticeably lacking. She wanted to investigate what patients and clinicians actually thought about trauma-informed care, and whether they felt it was even needed. She says she thought it would be remiss of the research community not to close that gap especially as provinces were starting to shift towards adopting trauma-informed models of care.
It was when she was defending her thesis proposal to her committee that one of the members encouraged Seint to adopt a patient-oriented research (POR) approach. Seint became excited about the possibility of incorporating patients into a research team. She applied to the Saskatchewan Centre for Patient-Oriented Research (SCPOR) trainee award program and was accepted.
Using her connections, Seint was able to recruit two patient advisors, one family advisor, and one health system leader. One of her patient advisors was herself a trauma survivor and PTSD activist – a valuable perspective that would help shape Seint’s research design.
“They helped me in ways that I could not have imagined,” she explains.
The patient perspectives Seint was able to tap into were rich and varied. She got a glimpse into how different patients of diverse backgrounds might interpret her research questions depending on whether they were an immigrant, Indigenous or had a different sexual orientation.
“The patient partner looked at the wording of my survey questions. We would sit down and she would say, ‘From a patient perspective this is how I interpret how this question is being asked. Is that what you want to ask?’”
“So it would make me think about how I might need to change these basic questions so they would be clearer to my participants.”
Seint says she was aware the data she was gathering from her survey could be dense and might not initially make sense to her patient colleagues. It was important the patient and clinician partners came together as a team to help dissect the results and interpret what they meant, so Seint presented the data in a way that was easier to digest.
“We gave them the numbers, explained what it meant in layman’s terms, showed them the pattern that was emerging based on the statistics. But then we would ask, ‘What’s your take on what is happening?’”
Seint says her experience with patient-oriented research has been invaluable and has taught her a lot about the importance of patient involvement in health research.
“It’s been great. I honestly don’t think I would have pursued this way of research,” Seint says.
She says patient-oriented research insures her work is always seen through the lens of a patient, and not just through the lens of a researcher.
“The moment we put on our research hats, it sometimes removes us from the patient experience.”
“We can get really heavy and intellectual about theory, but lose touch with the patient human experience. What the patient and family advisors offer is a perspective of what matters to them and what is feasible as well.”
“I can’t go back. I can’t go back to the old way of doing research. It makes sense if I am studying these populations I have to involve someone with that lived experience.”
The Saskatchewan Centre for Patient-Oriented Research (SCPOR) is a partnership of organizations that support patient-oriented research in Saskatchewan. For more information visit: www.scpor.ca