Research Ethics Review of Patient-Oriented Research: Perspectives of Researchers and Research Ethics Boards
Bibliographic record
Abstract
Background: Patient-oriented research (POR) incorporates patient partners as members of a research team. With the strengths and challenges of POR starting to emerge, one challenge we explore here is the research ethics application and review stages. Methods: We report the findings of a self-administered web-based survey in English and French for Canadian researchers or research ethics board (REB) perspectives (i.e., REB members or administrators) about the preparation and review of research ethics applications when patient partners are team members. The results are based on 165 survey responses and the team includes two patient partners who contributed fully to the conception, design, execution, interpretation of the findings, and in writing this manuscript.Results: The large majority of both groups correctly defined patient partner and had experience either reviewing or writing an application that included patient partners. REB perspective respondents indicated seeking more information to clarify patient partners’: roles, privacy training, experience/expertise, conflicts of interest, training, compensation; and at what stage the patient partner was recruited. Researchers indicated receiving questions about patient partners’: roles, training, compensation, access to data and participant information, affiliation, and curriculum vitae. Ideas related to adding questions to ethics applications about patient partners followed similar themes. Interpretation: This work reveals the knowledge base of REB perspectives and researchers in Canada with respect to ethics applications that include patient partners on research teams. We provide ideas for future work to help make the research ethics review and submission more efficient and clearer when patient partners are on research teams.
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How this classification was reachedexpand
Direct model labels (unvalidated)
Per-model category and study-design labels from the labeling rounds. They are machine output, unvalidated, and the disagreement between models ships as data. No study design here is MEDLINE-validated yet.
| Model arm | Categories | Study design | Confidence |
|---|---|---|---|
| gemma | Research integrity Domain: not available · Genre: Empirical About the Canadian research system: no · About a Canadian topic: no | Qualitative | low |
| gpt | no category Domain: not available · Genre: Empirical About the Canadian research system: no · About a Canadian topic: no | Qualitative | low |
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 | 0.527 | 0.806 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.003 | 0.001 |
| Bibliometrics | 0.007 | 0.010 |
| Science and technology studies | 0.001 | 0.031 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.003 | 0.025 |
| Research integrity | 0.009 | 0.204 |
| 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, unvalidatedLabeled directly by 2 models reading the full record.
The models disagree on parts of this classification; every voice is preserved in the section at the end of the page.
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".