108: Pediatric Patient Family Engagement with Clinical Research
Bibliographic record
Abstract
To improve health outcomes and enhance patients' health care experiences, research-based evidence is necessary for the decisions of health care professionals. Undertaking clinical research in the paediatric population, however, presents many unique legal and ethical issues. Children are considered a vulnerable population and as such, numerous methodological challenges arise in relation to their participation in research. Predictably, these difficulties may deter researchers and funding bodies, and have contributed to a dearth of high quality paediatric research. Indeed, <40% of medical decisions have the support of the required level of evidence and <50% of medicines administered during childhood have been formally studied in children. Subject recruitment is essential for conducting clinical research, yet is often perceived as the primary barrier to conducting research in the paediatric population. However, there are very few studies evaluating research uptake in a paediatric setting. The primary objective of this study was to determine how frequently paediatric patients and their families receiving care at a tertiary paediatric hospital participate in research. The secondary objectives were to explore factors that influence patient families' decisions to participate in research and how they perceived their experiences. We conducted a cross sectional study surveying families of children receiving care in a sample of clinical areas at a tertiary care paediatric hospital in the province of British Columbia, Canada. We used a self-administered questionnaire facilitated by trained interviewers. We used descriptive statistics to report the proportion of patient families that have previously been invited to participate in research, and among these, the proportion that had agreed to participate. We also report how patient families perceive research and their past experiences therein. We approached 657 families, of which 543 were enrolled (uptake rate of 82.6%). We found that 26% [95% CI 0.22 to 0.30] had previously been invited to participate in research, and 86.8% (95% CI 0.79 to 0.92) of those respondents had agreed to participate. Only a single family (1.1% [95% CI 0.00 to 0.06]) had a negative experience while previously participating in research, and 80.5% (95% CI 0.77 to 0.84) of all families were at least somewhat likely to participate in research again in the future. Despite the majority of patient families having never been invited previously to participate in research, there is a high rate of participation and willingness to partake again among those who are invited in a paediatric setting.
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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 | 0.020 | 0.056 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.005 | 0.003 |
| Scholarly communication | 0.004 | 0.003 |
| Open science | 0.001 | 0.005 |
| Research integrity | 0.002 | 0.002 |
| Insufficient payload (model declined to judge) | 0.011 | 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".