‘Adding another spinning plate to an already busy life <i>’.</i> Benefits and risks in patient partner–researcher relationships: a qualitative study of patient partners’ experiences in a Canadian health research setting
Bibliographic record
Abstract
OBJECTIVE: To better understand, based on patient partners' experiences, benefits and risks in patient partner-researcher relationships in a health research setting. DESIGN: Qualitative interviews with thematic analysis informed by a relational ethics lens. SETTING: A multidisciplinary health research centre in Vancouver, Canada. This study was codeveloped by patient partners and researchers at the centre. PARTICIPANTS: 22 people living with arthritis, with experience as members of a patient advisory board at the research centre from 1 month to 10 years. RESULTS: We identified three main themes: (1) Being Heard: Participants had experienced uncomfortable emotions (eg, feelings of insecurity) in their relationships with researchers. The discomfort, however, was minimised by the demonstration of mutual respect in their interactions. Specifically, participants valued environments without a hierarchy between patient partners and researchers, where contributions of each party were considered equally important, and where patients' voices were heard; (2) Cobuilding social relations: Participants valued building social relations with researchers beyond their expected interactions as partners in research and (3) Adding another spinning plate to an already busy life: Participants valued relationships with researchers who had cocreated environments that minimised the risks of physical and emotional impacts (eg, fatigue, stress, guilt) on them while juggling multiple obligations, priorities and their health. CONCLUSIONS: Findings provide valuable insights to guide relationship building between patient partners and researchers. Informed by a relational ethics lens, these findings are a critical step in supporting an ethically sound practice of patient engagement in research that prioritises patients' perspectives.
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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 | 0.022 | 0.001 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.002 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.000 | 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".