Beyond the role of participant: a firsthand account of the experiences of a patient-oriented research team

Abstract

Abstract Background Immigrants often find accessing and navigating the healthcare system difficult upon arriving in Canada. Existing challenges of accessing healthcare due to differing cultural norms, language barriers, limited health literacy, and system complexity have been outlined extensively in literature; however, evidence-informed practices to mitigate these disparities have yet to be determined. Our research team took a patient-oriented research (POR) approach to learn more about the lived experiences of immigrants as they attempt to access and navigate the health system upon immigrating to Canada. POR is a method that involves patients beyond the role of participant, recognizing the lived experiences of patients as expertise and empowering patient partners to drive research priorities. This approach empowers patient partners to steer the direction of research, ensuring the study is relevant and patient priorities are addressed. Main body In this article, we define POR and share our team’s experience of engaging in POR by providing a synopsis of team member recruitment, research priority establishment, and relationship building. We also share how joining forces with patient partners, rather than solely engaging with them as participants, benefits research endeavors and ensures patient priorities are addressed. Lastly, we present examples of how conducting POR leads to increased research capacity and personal growth for both patient partners and researchers. Conclusion Building the foundation of this study through the perspectives of patient partners has provided insight into the difficulties immigrants experience when attempting to access and navigate the health care system that can only be understood through first-hand experience. Engaging patients as active partners on research teams enhances the potential of strengthened patient engagement, increased patient commitment to treatment, and leads to improved health outcomes. Furthermore, POR provides researchers, patients, and those serving the community at hand, an opportunity to learn from one another.