Beyond the role of participant: a firsthand account of the experiences of a patient-oriented research team
Bibliographic record
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.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.015 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.003 | 0.002 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.000 | 0.005 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".