Beyond the Lab: A Journey into Patient-Oriented Research
Jamie Thomas’ journey began at Saint Francis Xavier University (StFX) with a single class, igniting a passion that would shape her career and redefine her approach to research.
As a fourth-year health innovation student specializing in biomedical sciences and the social determinants impacting health equity, Jamie and her team opted to address a capstone project proposed by the Maritime SPOR SUPPORT Unit (MSSU). Among several organizations invited to suggest project ideas, the MSSU seized the opportunity to inquire about ways to improve patient-oriented research training within undergraduate curricula. This was Jamie’s introduction to this transformative concept: patient-oriented research.
Jamie’s perspective underwent a profound shift. Patient involvement was not just a checkbox on a research protocol, but an integral aspect of her principles as a budding researcher.
“Now having this knowledge, I couldn’t imagine doing research without patient involvement,” said Jamie, who will be attending medical school at Dalhousie University in the fall. “I will continue to incorporate patient-oriented research into the future research I do as a physician.”
She recognized a gap in the educational journey of many undergraduates—a lack of exposure to the importance of patient-oriented research. In a system often skewed towards traditional laboratory methodologies, the voices of those most affected by research outcomes were often muted, she said.
“I feel like a lot of students in their undergrad don’t learn about patient-oriented research,” Jamie said. “It’s really important for future researchers to understand the importance of patient-oriented research in their practice.”
After graduation, Jamie’s passion for change led her to explore other SPOR units. Eventually, she found her calling in her hometown of Dawson as the First Nations Community Research Coordinator at the Yukon SPOR SUPPORT Unit. In this role, Jamie aims to embody the principle of “nothing about us without us,” building meaningful relationships and ensuring that communities are integral to the research process. Patient-oriented research became more than a methodology for Jamie—it became a bridge connecting communities with research, amplifying their voices in every stage of discovery.
“You can’t best serve a population that you’re trying to reach without incorporating them and having their feedback throughout every step of the process.”
Recommendation leads to action: MSSU partners with Maritime university in POR training pilot
One recommendation from her capstone project has now taken root within the university curriculum as a pilot program between the MSSU and StFX. The group had recommended that the MSSU work with Maritime universities to incorporate eLearning Modules as part of the undergrad curriculum in research-related programs, such as health sciences, human kinetics, psychology, nursing, and human nutrition.
Currently undergraduate universities in the Maritimes have few resources that inform students of the importance of patient-oriented research. Furthermore, the group identified that there appears to be a knowledge gap of information on patient-oriented research in general, since it is a developing area of research.
“Both of these factors mean that graduating students are not presently equipped to practice POR when they enter the professional field. This not only wastes the potential of students but also means that research and provincial healthcare systems could be more efficient than they presently are,” the report states.
MSSU Capacity Development Coordinator Sharon Skaling said a pilot program launched this spring at StFX where about 40 students participated in the MSSU Patient-Oriented Research Practicum. Students were first required to complete the modules of the CIHR-IMHA’s e-learning: A How-to-Guide to Patient Engagement.
“If even just one of the 40 go on to pursue patient-oriented research then it is a win,” said Sharon.
Planning is underway to offer the program again next spring, with potential expansion to undergraduates and high school students through the Capacity Development Advisory Committee.
MSSU Patient/Public Partner Donna Rubenstein, who co-facilitated the first session, said it was exciting to see the students’ curiosity and interest in patient-oriented research.
“Education is evolving, and students recognized the value of adopting a patient-oriented mindset in research. They connected quickly with the principles and could see the benefits to all areas of healthcare.”