Putting participation into perspective: The experiences of participants and their family members involved in a novel gene transfer trial
Bibliographic record
Abstract
The purpose of this qualitative study was to understand from the perspectives of participants and their family members their experiences related to involvement in the NORTHERN Trial, a novel gene transfer trial for people with severe heart disease who were no longer eligible for conventional treatments. Ten people participated in this study: 8 were participants in the NORTHERN Trial; 2 were family members of these participants. Telephone interviews were conducted with each of these individuals. Interviews were audio-taped, transcribed verbatim and then analyzed using a grounded theory approach. The resulting theory describes how, through a process of putting participation into perspective, these individuals initiated and sustained their commitment to participate in the NORTHERN Trial. In particular the findings draw attention to how people continually formulated assessments of the risks and benefits throughout their engagement in the trial and the considerations that they took into account to formulate these assessments.
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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 | 0.027 | 0.045 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.018 | 0.019 |
| Scholarly communication | 0.007 | 0.008 |
| Open science | 0.003 | 0.009 |
| Research integrity | 0.005 | 0.009 |
| Insufficient payload (model declined to judge) | 0.003 | 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".