Patient and Healthcare Professional Reflections on Consenting for Extra Bone Marrow Samples to a Biobank for Research—A Qualitative Study
Bibliographic record
Abstract
Little is known about patient perspectives regarding consent for obtaining extra research-specific bone marrow (BM) samples during the diagnostic procedure for acute leukemia (AL). This study aimed to better understand patient experiences with consenting to provide these samples and identify potential areas for practice improvement. Semi-structured interviews were conducted with patients treated for AL, 4-6 years prior to the interviews, and healthcare professionals involved with obtaining patient consent and sample collection. A total of 17 patients (14 agreed to provide a sample and 3 did not have a sample in the biobank) and 5 healthcare professionals were interviewed, achieving data saturation. Patients supported increasing public knowledge about research and noted the importance of friends and family in providing emotional support and retaining information. Despite time pressure and anxiety, the decision to donate a research sample did not require much deliberation. Proximal factors informing decisions included impact on patient health and family and anticipated, procedure-associated pain; distal factors included altruism and trust in healthcare professionals. Key information included expected pain and management, the purpose of research samples, and sample security and privacy. Our findings suggest that BM research sample collection may be facilitated through optimizing the environment where information is provided and the type of information provided, including pain management options and the value of the samples for current and future research.
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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 | no category Domain: not available · Genre: Empirical About the Canadian research system: no · About a Canadian topic: no | Qualitative | low |
| gpt | Metaresearch Domain: Methods · Genre: Empirical About the Canadian research system: no · About a Canadian topic: no | Qualitative | low |
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 | 0.063 | 0.115 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.014 | 0.016 |
| Scholarly communication | 0.008 | 0.007 |
| Open science | 0.003 | 0.010 |
| Research integrity | 0.005 | 0.008 |
| 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, 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".