Patient Partners’ Motivations and Meanings for Research Engagement: A Qualitative Study
Bibliographic record
Abstract
Context: Patient engagement in research refers to the meaningful and active involvement of patients and caregivers as co-researchers (patient partners). The interdisciplinary nature of patient engagement in primary care research inherently influences team dynamics. A shared understanding and respect for all team members’ (including patient partners’) backgrounds, motivations, and expectations is imperative to partnership. Objective: To explore the motivations and meanings that patient partners attach to their role. Study Design and Analysis: A qualitative study was co-designed and led with a patient partner, using semi-structured interviews. Analysis captured the voices of patient partners through a thematic analysis process. Setting: Pan-Canadian. Population Studied: Patient partners involved in a Canadian Institute of Health Research project funded through one of 13 Strategy for Patient-Oriented Research funding calls. Intervention/Instrument: Semi-structured interviews were co-conducted virtually by a patient partner (RS) and academic researcher (AMC) and lasted 60-90 minutes. Open-ended interview questions were co-developed to address the research objective. Outcome Measures: Participants’: (a) reason(s) for becoming, and perceptions of the (b) definition, (c) purpose and/or value, and (d) roles and/or responsibilities of patient partners. Results: Twelve (out of 15) individuals agreed to participate; 10 are women. Participants shared that although knowledge of living with a health condition and/or accessing health services provided the lived experience required to be a patient partner, they had other personal drivers motivating their decision and hopes for being co-researchers. Motivations included: altruism, professional background, personal history, and desire for personal growth. While definitions of ‘patient partner’ varied, there was agreement that advancing our shared understanding of both the word ‘patient’ and the word ‘partner’, along with the underlying purpose(s), role(s) and responsibilities of patient partners is imperative. Conclusions: Our findings advance insights into patient partners, which are relevant to primary care researchers and physicians. Researchers will benefit from taking the time to enhance their understanding of patient partners’ hopes and motivations for partnering in research. An appreciation for what patient partners feel they have to offer and ultimately hope to accomplish nurtures positive team dynamics.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.034 | 0.037 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.012 | 0.008 |
| Scholarly communication | 0.006 | 0.006 |
| Open science | 0.002 | 0.008 |
| Research integrity | 0.002 | 0.004 |
| Insufficient payload (model declined to judge) | 0.004 | 0.001 |
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 source (direct Gemma or distilled Codex), 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".